Gathered View - Prader-Willi Syndrome Association
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The
Gathered View
National Newsletter of the Prader-Willi Syndrome Association (USA)
CEO View By Steve Queior, PWSA (USA)
Research, Chapter
Activities, and
Matching Dollars
– All Blooming
this Spring!
As Rob Lutz of our Research
Committee points out in this issue,
numerous clinical trials are coming online
this year. Both his article and the fact-filled
chart included in it are must-read items for
the PWS community, as we work to ensure
that these studies are populated with
participants.
His article, and the links to the
pharmaceutical firms provided, will let you
see if the individual with PWS that you
know, love, and care for might meet the
criteria for a study that could help develop
more effective drugs available or new
treatments.
Also, we all should read about the
research (page 8) titled High Levels of
Caregiver Burden in Prader-Willi syndrome.
Evan Farrar represented PWSA (USA)
on the research team that executed this
study over the past 18 months. In addition
to the study’s specific findings, we feel
good about the fact that having caregiver
burdens quantified and summarized in a
highly credible paper will help us advocate
for insurance coverage and/or other forms
of support that could address the costs of
providing care.
And the research activity of 2018
does not stop there: Another key article
in this issue discusses research and
results regarding the use of vagus nerve
continued on page 4
Volume 43, Number 3 ~ May-June 2018 ~ Our 43rd Year of Publication
The Gathered View ~ Prader-Willi Syndrome Association (USA) May-June 2018 1
PWSA (USA) Medical and Research View – Making a Difference!
Research is one of PWSA (USA)’s Five Pillars of Support and also
a vital component to the treatment of Prader-Willi syndrome.
Thanks to the work of a dedicated PWSA (USA) board member,
we can share with you a compiled list of upcoming PWS drug trials.
Summary of Active Clinical Trials for
Prader-Willi Syndrome Hyperphagia
It is an exciting time for drug development for Prader-Willi syndrome! Trials for several drugs that may treat behaviors related
to hyperphagia (excessive hunger) have begun or will begin soon. We urge all families/caregivers to consider enrolling in a clinical
trial. It is important for our community that enrollment in these studies is completed as soon as possible. However, clinical
trials involve risks and labor – please consult with your physicians and refer to the following resources for more background on
participating in clinical trials https://www.pwsausa.org/research-announcements/
For those who are potentially interested in participating in a clinical trial, please see the table below for a comparison of the
trials. This information was collected from the sponsoring companies to provide a complete and comparable listing of the studies.
Following the table is more information about each study and links for more information (especially information on sites where
these studies will be taking place).
Drug Name GLWL-01 DCCR Cannabidiol Carbetocin Livoletide
oral solution
Company GLWL Research Soleno Insys Levo Millendo Therapeutics
Therapeutics Therapeutics Therapeutics
Phase1 II III II III Phase IIb/III
Triple blind randomized Triple blind, Randomized, Blinded, Double blind, randomized,
Type of study2 crossover placebo- Double-Blind, randomized placebo-controlled study
controlled Placebo- (followed by
Controlled open label)
Route of 3 oral capsules twice a Once a day tablet Oral solution, Intranasal Subcutaneous injection once
administration day twice daily per day
Eligible Ages 16-65 years old Ages 8 and above 8-17 years of age 7-18 years old 12-65 years old
Eligible BMI3, 27-60 kg/m2; and Not applicable Not applicable All BMI; no
PWSA (USA) Medical and Research View – Making a Difference!
Trials, continued from page 2
Drug Name GLWL-01 DCCR Cannabidiol Carbetocin Livoletide
oral solution
Primary Hyperphagia Change in Hyperphagia Hyperphagia Hyperphagia Questionnaire
Endpoint4 Questionnaire for hyperphagia- Questionnaire Questionnaire for Clinical Trials (HQ-CT)
Clinical Trials (HQ-CT) related behavior for Clinical for Clinical trials
as measured by Trials (HQ-CT) (HQ-CT)
Hyperphagia
Questionnaire (HQ-
CT)
Likelihood Patients will either be Patients will have a 1 50% Equal chance of Trial is 3 arms, equally
of being on placebo first and in 3 chance of being being on placebo weighted with 2 active
on placebo then on active drug or on placebo for blinded period doses and 1 placebo for the
during the vice versa first 3 months. All patients
study? then take active drug for 9
additional months
Can receive No Yes, if eligible for Yes At least 1-year Yes. Patients who initially
active drug open label extension open label follow randomize to placebo will
after initial study up planned receive active drug for
portion of approximately 9 months
the study during the open label
(open extension
label)5?
When will Started Early 2018 Q2 2018 Fall 2018 Q4 2018
trial start?
# of 34 ~100 60 >100 ~150
participants
to be
included
Footnotes:
• Drugs in development go through three stages called Phase 1, Phase 2 and Phase 3. Phase 1 is the first phase of human tests
and is usually done in healthy volunteers. Phase II usually includes treatment in patients to judge efficacy and is often done to
determine dosing. Phase 3 is the stage needing the most patients and lasts the longest. It is typically done with randomized,
placebo-controlled trials to finalize the testing before FDA review.
• Definitions of Study Type:
1. Placebo—a “fake” drug that looks like the active drug but has no medicine. Placebo is given to compare results for an active
drug to a fake drug to see if the active drug is actually making a difference.
2. Randomized— this refers to a trial that randomly chooses which patients are on active drug and which are on placebo.
1. For a crossover study, it is randomized whether one is put on active drug or on placebo first
2. For a parallel arm study, it is randomized whether one is put on placebo or on active drug
3. Triple blind or blinded—to avoid bias, trials often prevent patients, doctors and companies from knowing if they have
received active drug or placebo. This is referred to as blinding or a blinded trial. With a triple blind trial, neither the patient, the
doctor or the company know who is getting active drug and who is getting placebo.
4. Crossover design—each patient receives both placebo and active drug over equal time periods but no one knows if the
placebo is first followed by the active or vice versa.
• BMI – “Body Mass Index” is a measure of obesity used by clinicians and is calculated by measuring weight and height.
Individuals with BMIs over 25 are considered “Overweight” and individuals with BMIs over 30 are considered obese.
• Primary Endpoint: Clinical trials typically have one measurement that is the primary determinant of the success of the trial.
For example, in most PWS hyperphagia trials, companies will use a hyperphagia questionnaire to measure changes in levels of
hyperphagia as the primary endpoint. Clinical trials usually also have secondary endpoints that are measured in addition to the
primary endpoint.
• Open label – often clinical trials have a blinded phase followed by an “open label” extension where all patients receive active
drug and continue to be monitored for longer term safety and tolerability. continued on page 4
The Gathered View ~ Prader-Willi Syndrome Association (USA) May-June 2018 3
PWSA (USA) Medical and Research View – Making a Difference!
Trials, continued from page 3
and effective in the treatment of Prader- of Florida and Winthrop University.
Willi syndrome. To determine if CBD Further development, including the
INFORMATION AND LINKS is effective in Prader-Willi, the trial Phase 3 study, will be pursued by Levo
PROVIDED BY COMPANY will be evaluating in children between Therapeutics. Plans for the Phase 3 study
SPONSORS: 8 and 17 years old whether the use of are subject to change.
GLWL: CBD provided as an oral solution can https://www.levotx.com.
The primary objective of this clinical help control continual feeling of hunger
trial is to evaluate the efficacy of GLWL- regardless of food intake and the effect Millendo Therapeutics:
01 given in capsules at doses of 450 mg of CBD on compulsive behaviors. After Millendo Therapeutics is preparing
twice a day, compared to placebo, in completion of the study, patients will be to initiate a Phase 2b/3 study for
reducing hyperphagia-related behaviors offered the opportunity to enroll in an livoletide (AZP-531) with clinical sites
in male and female patients with PWS. open-label, long-term safety study. For in both the US and Europe. Millendo
This medication has been shown to be more information, a description of this recently acquired Alize Pharma and is
safe and well tolerated at doses up to study including the location of the sites continuing the development of livoletide
600 mg given twice a day for 28 days that are enrolling patients is available at in PWS. Livoletide is an analogue of
in patients with Type 2 diabetes. Side http://bit.ly/2EWPn9yInsys. unacylated ghrelin, that counteracts
effects were mild and moderate, and some of the effects of acylated ghrelin,
generally related to the gastrointestinal Levo Therapeutics: commonly referred to as the hunger
tract. Carbetocin is an investigational hormone. Livoletide was previously
Multiple study sites are currently drug that was created to have effects studied in a double-blind, randomized,
active: For the latest information on this in the body like oxytocin. Carbetocin placebo-controlled Phase 2 clinical trial
clinical trial and the list of sites, visit the is not approved in the United States, with a total of 47 subjects with PWS,
page on the clinicaltrials.gov website: but is approved in some other countries demonstrating an improvement in
http://bit.ly/2J6NYQpGLWL for treatment of women with excessive hyperphagia as measured by the HQ at 2
http://bit.ly/2Hax470GLWLresearch bleeding after giving birth via caesarean weeks. (http://bit.ly/2EY7xHZMillendo)
section. More information on Millendo and
Insys Therapeutics: Carbetocin has been studied by livoletide can be obtained at www.
Insys Development Company, Inc. is Ferring Pharmascience Center for the millendo.com. Trial details will be
conducting a clinical trial to determine treatment of PWS in a Phase 2 study available later in 2018. ■
if the use of cannabidiol (CDB) is safe at Vanderbilt University, University
CEO View, continued from page 1 firmly believe that the more we all work During the 24 hours from 12 noon
with them, the more positive results we’ll on Tuesday, May 1st to 11:59 a.m.
stimulation (VNS) in Prader-Willi all see. Wednesday, May 2nd, every online
syndrome (page 7). donation between $25 and $100 will be
Shifting from our national office to
chapters around the country, the next
Beginning May 1st, matched by a very generous foundation
located in the community of our national
10 weeks are among the busiest of the the 24-Hour office. Please mark your calendar and
year. With mild weather returning, many
state chapters are having outdoor events
Giving Challenge is follow the easy steps on our website,
social media, and emailed to you.
that help increase awareness and educate an opportunity to Together we can generate over
others about the syndrome, raise funds to have YOUR dollars $100,000 in this one-day period, all
help states provide their programming, to help strengthen our Five Pillars of
and provide fun and fellowship for all. DOUBLED. Support: Awareness, Family Support,
Please consider supporting these Research, Education, and Advocacy.
upcoming chapter events - information Last, but hardly least, the absolutely As always, thank you for all your
about them is in this issue and others unique opportunity called the 24-Hour support, and particularly for helping
available on our website – and then Giving Challenge is right around the us exceed our goal in the Giving
become more involved in your state’s corner. This opportunity to have dollars Challenge, when you can Be The One
chapter on a year-round basis. The 33 by you, your friends, family members, Saving and Transforming Lives! ■
state and regional chapters of PWSA co-workers, and neighbors DOUBLED
(USA) are tremendous assets and we is not to be missed.
4 May-June 2018 The Gathered View ~ Prader-Willi Syndrome Association (USA)
PWSA (USA) Medical and Research View –
Constipation in children with PWS
By Kathy Clark, R.N., M.S.N., CS-BC, Coordinator of Medical Affairs, PWSA (USA);
Reviewed and approved by Ann Scheimann, M.D.
Difficulty passing bowel movements the bowels contract or stimulate a bowel
(BM) is a common problem in PWS, movement. Other oral medications, such
even during infancy. Very soft daily as senna, activate the colon to propel a
bowel movements are the goal – no bowel movement along. Some families
bunny pellets, no liquid stools, no pain use these medications daily, and others
or discomfort. Some children will release add these only if things are not moving
just a small BM, unaware that there is a along. Taking these medications by
bigger load behind – so don’t be afraid mouth or feeding tube can take 1-3 days
to ask to see what has been produced. to produce results.
Complete evacuation is the goal. The “bottom up” approach is helpful
when there is already a backup of stool. no time for speed or impatience. Bring a
PWS challenges book to read together, or play music.
Poor motility in the entire GI tract Children quickly learn to “hang on” to
– from sucking, chewing, and swallowing a BM if it hurts to pass. Stimulating the Toilet tricks
to stomach emptying, to finally pooping anus can help release the BM and may Use statements rather
- things just don’t move along in a typical bring fast relief. A glycerin suppository, than questions (e.g., “It is
pattern. There may be slow spots along which has no medication, only a time to sit on the toilet”,
this pathway, not just at the exit. lubricant, will stimulate the rectum not “Do you need to use
Low muscle tone (hypotonia) – slightly and can be enough to prompt the bathroom?”). They
movements such as crawling and walking a BM. Dulcolax suppositories have may be unaware of the
help the passage of food, but are generally medication which causes the rectum to fullness in the colon.
delayed skills for children with PWS. squeeze and is a faster therapy. Neither You may need to reward the sitting,
Time – Parents and children are one works unless it is touching the inside even without any results – think sticker
so busy with the many therapies and wall of the rectum – not stuck right charts.
appointments that life is often too rushed into the BM. Grease up the anus with Correct positioning on a toilet is very
to think about the last bowel movement some Vaseline for your child’s comfort important for children – and adults.
or to take time for the potty. in passing the large BM; this will also American toilets are poorly designed for
Sensation – not feeling pain may also stimulate defecation. Have them lie on good bowel elimination; we are designed
mean they miss the “full” signal that it is their side to insert the suppository, with to squat when pooping. For a child, or a
time to poop. their knees up to their chest. If they can short adult, the toilet height will never be
Gut microbes, probiotics, and wait 10 minutes to push, it is more likely ideal for good bowel health. The knees
fiber – gut microbes may not be typical to produce the best results. Drinking a should be at least as high as the hips – a
in people with PWS, so a probiotic is glass of water before sitting on the toilet true squat is best to open up the muscles
worth trying. PWSA (USA) no longer is also helpful – you may have to use your that release the BM. A small footstool
recommends a high fiber/raw foods diet usual tricks to get them to drink. at the toilet is a good investment – there
for persons with PWS because of the risks Once a child has had lots of are toilet footstools, such as the Squatty
of fermentation if the digestive tract is constipation bouts, they may lose the Potty, which may be very helpful -
not moving well. Fruits and vegetables, sensation that it is time to “go”. They will www.squattypotty.com
softened and in small pieces, are an have to retrain their bowels. Swallowing Keep their hands occupied so they
essential focus of a healthy diet. stimulates a reflex in the colon, so the cannot hold onto the toilet seat. This
best time to sit on the toilet is right after position can increase muscle tension
Top down, bottom up a meal. Make it a habit after breakfast. A of the pelvic floor and make it harder
If your child has had constipation, chart with stickers can be a motivator! to pass the stool comfortably and
prevention should start at the “top” – Some parents find abdominal massage completely.
over-the-counter medications that will is helpful for any age child; there are Before adding any over-the-counter
make the food hang onto water, making Youtube videos explaining this technique. medication, call your health care provider to
the BM less likely to dry out. Miralax and Blowing up a balloon or blowing bubbles discuss the unique issues for your own child.
milk of magnesia are examples of stool can help a child relax their bottom These are just guidelines for a very common
softeners. Stool softeners do not make muscles while sitting on the toilet. This is problem for children with PWS. ■
The Gathered View ~ Prader-Willi Syndrome Association (USA) May-June 2018 5
PWSA (USA) Medical and Research View – Making a Difference!
Food Drive and Craving
structure for the regulation and processing of food motivation
and satiety signals crucial for integration of incoming sensory
Study: a Review of the information for food stimuli (Rolls, 2005). PWS is also
associated with reduced cortical and grey and white brain
tDCS Method and PWS matter with reduced brain signaling compared with healthy
controls (Holsen et al., 2012; Honea et al., 2012; Zhang et al.,
Submitted by: Merlin G. Butler, M.D., Ph.D., F.F.A.C.M.G.,
Director, Division of Research, Director, Genetics 2015).
Clinic, Professor of Psychiatry, Behavioral Sciences and We studied the food drive and craving in 10 adults with
Pediatrics, ABMG Certified Clinical Geneticist and PWS, 11 obese adults and 11 healthy-weight adults in five
Clinical Cytogeneticist, Departments of Psychiatry & consecutive daily sessions of active or non-active tDCS
Behavioral Sciences and Pediatrics, Kansas University treatments. Standardized psychometric instruments assessed
Medical Center food craving, drive and hyperphagia by self-report and caregiver
Eating behavior can be altered including decision-making assessment over 30 days in our study. Baseline differences
and cue-induced food craving in healthy adults by stimulating were observed in severity scores for the Three-Factor Eating
regions in the prefrontal cortex, although the mechanisms Questionnaire (TFEQ) and the Dykens Hyperphagia
underlying hyperphagic behavior is not fully understood. Questionnaire (DHQ) for PWS compared to healthy weight
Transcranial direct current stimulation (tDCS) is one of controls while obese participants were more similar to the
the emerging non-invasive, safe and painless methods which healthy weight controls. Active tDCS treatment in PWS was
administers a weak electrical current to the forehead that associated with changes from baseline in TFEQ Disinhibition-
penetrates the skull and Factor II (at 30 days) and
affects brain/neuron Total Scores (at 30 days)
functioning, thereby and participant ratings
influencing cognitive of the DHQ Severity
or thinking processes (at 5 days) and Total
(Nitsche and Paulus, Scores (at 15 days). Our
2000; Fregni et al., pilot study supported
2008; Boggio et al., sustained effects of
2009; Goldman et al., tDCS to reduce food
2011). Our goal was drive and behaviors
to assess the value of impacting hyperphagia
applying tDCS to the in PWS beyond the
prefrontal cortex area to five consecutive days of
activate the inhibitory treatment without any
regions controlling brain recognized safety issues
pathways to lower food (Bravo et al. 2016).
craving and hyperphagia Transcranial direct
in Prader-Willi syndrome (PWS). We conducted a multicenter current stimulation may represent a straight-forward, low risk
pilot double blind, sham-controlled transcranial direct current and cost method to improve care, management and quality
stimulation during mid-day for 30 minute sessions to the right of life in PWS but further testing of this device is required for
dorsolateral prefrontal cortex (DLPFC). DLPFC is a key brain treatment of hyperphagia in PWS. ■
References Neurol. 24(5):642-3. Honea et al. (2012). The neuroanatomy of genetic
Nitsche & Paulus. (2000). Excitability changes Goldman et al. (2011). Prefrontal cortex subtype differences in Prader-Willi syndrome. Am
induced in the human motor cortex by weak transcranial direct current stimulation (tDCS) J Med Genet B Neuropsychiatr Genet. 159B:243–
transcranial direct current stimulation. J Physiol. temporarily reduces food cravings and increases 253.
527(3):633-639. the self-reported ability to resist food in adults with Zhang et al. (2015). The neurobiological drive for
Fregni et al. (2008). Cortical stimulation of the frequent food craving. Appetite. 56(3):741-746. overeating implicated in Prader-Willi syndrome.
prefrontal cortex with transcranial direct current Rolls. (2005). Taste, olfactory, and food texture Brain Res.1620:72–80.
stimulation reduces cue-provoked smoking processing in the brain, and the control of food Bravo et al. (2016). Transcranial direct current
craving: a randomized, sham-controlled study. J intake. Physiol Behav. 85:45–56. stimulation reduces food-craving and measures of
Clin Psychiatry. 69(1):32-40. Holsen et al. (2012). Importance of reward and hyperphagia behavior in participants with Prader-
Boggio et al. (2009). Transcranial direct prefrontal circuitry in hunger and satiety: Prader- Willi syndrome. Am J Med Genet B Neuropsychiatr
current stimulation: a novel approach to control Willi syndrome vs simple obesity. Int J Obes. Genet.171B(2):266-75.
hyperphagia in Prader-Willi syndrome. J Child (Lond) 36:638–647.
6 May-June 2018 The Gathered View ~ Prader-Willi Syndrome Association (USA)
PWSA (USA) Medical and Research View – Making a Difference!
Research in Progress: The Use of
Vagus Nerve Stimulation (VNS) in
Prader-Willi Syndrome (PWS)
By Anthony J. Holland, M.D., CBE (United Kingdom), President, IPWSO
From Observation to Understanding before and during treatment
The challenge in terms of new treatment development using VNS. There are now
for hyperphagia, and for behavioral problems and mental ill vagus nerve stimulators with
health, is a lack of understanding of the underlying causes. rechargeable battery and Subject, age 26, demonstrating an
However, a combination of the use of new technologies such as controls, which are about the external VNS device.
neuroimaging, observational studies, and findings from clinical size of a mobile phone, which are worn externally. The battery
trials are providing insight into why these problems commonly pack is connected by wire to an electrode worn in the left
affect people with PWS. outer ear for four hours each day (see photograph). This type
Why the Vagus Nerve? of VNS is referred to as transcutaneous VNS (tVNS). The use
The vagus nerve has many important biological functions. of this external device has been the subject of a second study
The left and right vagus nerves run from the brain stem involving six participants. The findings of this study are now
through the neck to the chest and abdomen, linking, for being collated and they will be the subject of a paper in the
example, the hypothalamus and the gastrointestinal system. near future. As with the implanted devices, improvements in
This provides part of the feedback loop that enables the brain behavior are being seen, but there remain some concerns about
to accurately regulate food intake. It also regulates cardiac compliance and the optimum treatment protocol. Benefits take
and respiratory functions, and facilitates our complex and many months to become apparent, and it has been difficult
multifaceted response to threat. This latter role described by Dr. to encourage some people with PWS to persevere using the
Stephen Porges is what he has named the Polyvagal Theory. device each day. However, as those who have persisted have
Why Vagus Nerve Stimulation (VNS)? felt the benefits, they then keen to continue. Working with Dr.
Stimulation of the vagus nerve from a surgically implanted Stephen Porges, we are also investigating how VNS is working
device has a long history as a treatment for epilepsy and for in order to better understand the underling dysfunction that
depression. There have been incidental observations that people puts people with PWS at risk for temper outbursts, and to be
who have had VNS for epilepsy have lost weight. Given this able to target those most likely to benefit.
observation and the role of the vagus nerve in the regulation Where Next?
of eating behavior, we undertook a trial of VNS in three The increased propensity to temper outbursts in people
people with PWS. In the treatment of epilepsy, the implanted with PWS is at least partly due to a biologically determined
stimulator is programmed to switch on and off continually over abnormality of the autonomic nervous system and, in turn,
time and may take months to have an effect. The hypothesis in of emotional regulation. We are now studying the use of
this first study was that VNS from such an implanted device other types of transcutaneous stimulation, which may also
would lead to an increased ability to control food intake and to be effective but perhaps easier to use. Although we have not
weight loss. observed any direct effect on eating behavior, as emotional
Early Findings regulation has improved, our participants have become more
As reported (Manning et al, 2016), contrary to our accepting of food regulation. After we fully analyze the data,
predictions, VNS had no marked effect on hyperphagia or the findings will be submitted for publication and any further
weight but some weeks into the active stimulation phase, two of research needed can be conducted and recommendations made
the three people with PWS and their parents reported a marked about the use of such devices for children and adults with
improvement in behavior. As this study was investigating the PWS. ■
effects of VNS on hyperphagia, behavioral data had not been Acknowledgements
collected; however, the two participants and their parents We would like to thank the participants, their families, and
reported such improvements that both asked that the VNS others caregivers for their support, and the Dunhill Medical
continue. These benefits have been maintained over five years. Trust, Sam’s Foundation, the UK PWSA, and the Foundation
A Second Trial of VNS Using an External Device for Prader-Willi Research for funding these studies.
This serendipitous observation provided an important lens Manning et al (2016). Novel insights into maladaptive behaviours
to focus on the reasons for such behaviors, and also led to the in Prader–Willi syndrome: serendipitous findings from an open trial
need for a more systematic study to collect behavioral data of vagus nerve stimulation. JIDR 60(2), 149-155.
The Gathered View ~ Prader-Willi Syndrome Association (USA) May-June 2018 7
Family and Caregiver Support
Counselors Corner
New Research Study Documents
High Levels of Caregiver Burden in Prader-Willi Syndrome
By Evan Farrar, M.A.
The results of a new research study, published in PLOS ONE, reveal high levels of burden on caregivers in the PWS commu-
nity. Caregivers of people with PWS, to varying degrees, can experience:
• Changes at work (88%)
• Less sleep (61%)
• More mood disruptions such as feeling anxious (94%) or depressed (77%)
• Increased challenges in marital and romantic relationships (89%)
The study, “High levels of caregiver burden in PWS,” is the first published research developed by the PWS Clinical Trial
Consortium (PWS-CTC). The PWS-CTC is an international, collaborative research consortium gathering stakeholders
from pharmaceutical industries, academia and patient organizations to facilitate the development of clinical trials in PWS.
The consortium is supported and funded by patient advocacy groups including PWSA (USA), the Foundation for Prader-
Willi Research, Prader-Willi France, the International Prader-Willi Organisation, industry partners and experts from
Academia (for more information see https://www.pwsctc.org/). It is also the first study to directly measure challenges faced
by caregivers of people with PWS, making it a unique and important contribution to understanding the daily challenges
faced by caregivers. The study was based on the responses of 142 caregivers from the United States.
The study is a clear example of how research can inform providing family support to the PWS community. Stacy Ward, a
PWSA (USA) Crisis Intervention and Family Support Counselor, explains, “The PWSA (USA) family support program will
use the results of the caregiver burden study not only to develop new resources that will support caregivers, but to engage
caregivers differently based on their needs identified in this survey. The mission of our family support program is to provide
meaningful practical support and the results of this study will help us to do that more effectively.”
The Caregiver Burden study also has two other important outcomes:
1. It points to the need for additional study of the caregiver experience in the PWS community.
2. It validates the experience of caregivers who often feel the burdens they face are unique to their specific
situation. The study suggests this is not the case, helping caregivers know they are not alone in the experience
of caring for a person with PWS.
To learn more about the caregiver study and to dig deeper into its results, you can read the entire research article at
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0194655 ■
Note: Evan Farrar represented PWSA (USA) on the caregiver burdens research team and is listed as one of the study’s authors.
Newly Updated for 2018! Eighth
Medical Alerts Annual
by PWSA (USA)
20% member discount Charity Golf
For parents/caregivers! Share
crucial medical information and the Tournament
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look for and do, when GI problems are presented in PWS. Pub benefiting the Texas Prader-Willi Association
visit: http://bit.ly/2qzBEACMedicAlertPWS for purchase. ■ (TXPWA) Donate via PayPal www.txpwa.org ■
8 May-June 2018 The Gathered View ~ Prader-Willi Syndrome Association (USA)
Development
Fourth Annual Clint Hurdle “Hot
Stove” Dinner a Great Success!
Clint gives a great presentation, and the 2018 Hot
Stove dinner was no exception!
A delicious dinner, great music,
baseball, and great company perfectly
describe the 2018 Clint Hurdle “Hot
Stove” dinner! Through the kindness
and generosity of attendees, donors, and
sponsors, over $79,000 was raised to help
fund PWSA (USA)’s Family Support
program! Funds raised will go directly
Pirates players past and present lent their support for
into providing information and resources the Hurdle family and PWSA (USA)!
to the PWS community, such as: school
assistance; behavior management and
modification; nutrition education; T
crisis intervention; legal, and legislative Special thanks to all who supported
the event including our event sponsors: Maddie Hurdle with her grandparents, Clint Sr.
advocacy; medical intervention; and and Louise Hurdle.
so much more. Just as importantly, Helton Foundation
awareness about Prader-Willi syndrome Continuum IT Management Platform
was raised and attention brought to the Dawn Allard
needs of the PWS community. In all Seminole Hard Rock Casino
senses of the word, the event was a great
Pirates Charities
success! ■
Vanguard
the Hurdle family
T
The silent auction was a sports fanatics delight with
autographed jerseys, baseballs, bats, and more!
PWSA (USA) staff, Clint and Maddie Hurdle
and friends celebrate another successful Hot Stove
dinner. The event raised over $79,000 for PWSA
(USA)’s Family Support program. More than
This Pirate is a favorite, especially for young Pax!
130 people attended the 2018 Hot Stove dinner,
enjoying live music, delicious food, and excellent
Many thanks to all who donated, sponsored, and The Pirate Parrot was a favorite, especially
company!
attended! with the kids!
The Gathered View ~ Prader-Willi Syndrome Association (USA) May-June 2018 9
From The Home Front 2017 Convention Fun!
Editor’s comment: “Sometimes you kids with PWS do. She didn’t crawl until
meet someone who sees a silver lining in 24 months, didn’t walk until 30 months.
everything. Brittnee Peterson is one of those She still doesn’t talk. As a baby she never
people. Here is her story.” cried. She aspirated all the time; I must
have changed her formula 10 times! She
Just before I learned I was pregnant had PT, OT and ST, however, none of
with Paislee, our daughter Olivia (3 the therapies seemed to help. Still no
mos.) passed away. Olivia had 1p36 answers, so we changed pediatricians.
Deletion Syndrome. I vowed to give all Dr. Rihka Chadalawada ordered more
of our troubles to God so I could enjoy genetic testing but had already told
my pregnancy and enjoy my “rainbow us to research Prader-Willi syndrome.
baby” after she was born. During Paislee had begun gaining weight for
pregnancy with Paislee, she showed a
lot of the same issues that Olivia did,
small at each gestational milestone, low I started This is now a reality: we are an official
amniotic fluid, etc. I declined all of the chapter! I want families in Alabama
testing, including an amniocenteses. I
reading about to have that same feeling that I had in
wanted to be able to enjoy my pregnancy Prader-Willi Orlando; that they have people that love
with her; I gave it to God. She was born them and know exactly what they are
at 39 weeks via scheduled caesarean, with syndrome going through. I want to share resources
no complications, and weighed a tiny 3 and doctors. I was shocked when I
pounds 10 ounces. The NICU performed
and suddenly received the list of disconnected families
genetic testing, but missed the PWS. everything and individuals in Alabama. Many
are not on social media, nor actively
made sense. involved with PWSA (USA); there were
many adults with PWS that have never
met another person with PWS. THIS
no apparent reason. Her calorie intake ALL HAS TO CHANGE. If you live
was about the same. Also, I started in Alabama, please join us for our first
reading about Prader-Willi syndrome and meeting to be announced soon.
suddenly everything made sense. Within
seven days, we got the genetic test back.
Paislee Paislee had PWS. This all happened I want families ...
in October of 2017, and I took up the
search for Facebook groups. I called
to have that same
PWSA (USA), who plugged me into the feeling that I had
Facebook Groups, and watched as my
Paislee having PWS makes her who Facebook Messenger BLEW up! I saw ... that they have
she is, personality and all. As you know, that there was a national convention just
most kids/babies with PWS are the most a few weeks away. I knew I had to find a
people that love
loving babies. She came in a time of my way for us to make it to the convention. them and know
life that was hard as I struggled with Before I knew it, we had flights and
depression after my daughter passed everything booked. Thanks to PWSA exactly what they
away. Paislee is the most loving child I (USA)!
have ever met. She can walk into a room The convention was amazing! I get the
are going through.
and brighten everyone’s day. I needed her chills and want to cry happy tears every
to be the easy baby that she was. So with time I think about it. I learned so much,
this being said, I am so thankful for the Paislee and I both met lifelong friends. I Brittnee and Albert Peterson live in
life that God has blessed us with, Prader- cannot wait until 2019! Pelham, Alabama. Please contact her at
Willi and all. When leaving the convention, I knew Brittneepetersonpwsalabama@gmail.
Paislee had all of the delays that many I had to start an Alabama Chapter. com. She would love to hear from you! ■
10 May-June 2018 The Gathered View ~ Prader-Willi Syndrome Association (USA)From The Home Front
An Amazing in August with Maureen and her
husband in Florida. When each girl
Grandmother was sent on a “Make a Wish” trip
to Disney, Maureen went to help
This submission is to honor my sister with the girls. Kate and Meg enjoy
Maureen O’Neil on her 70th birthday shopping for new sneakers and
and her unconditional devotion clothes, and they all enjoy going to
to family. For the last 18 years she the bookstore during their special
(along with her husband Chip), has times together. This has become a
made a lifesaving difference for twin special time for the girls.
granddaughters Kate and Meghan, Meg recently had major back
who have Prader-Willi syndrome. surgery for scoliosis. Maureen spent
This is the shared glimpse of their lives five weeks with her in the hospital,
together, submitted by Doris Feirer. then the rehabilitation that followed.
Kate and Meghan were born The follow-up and continued therapy
in New Jersey, on November 19, was at her home before Meg was
1999. It took two weeks to receive cleared to go to camp.
Meg Kate Most recently Kate and Meghan
the diagnosis of PWS from the
hospital; they had other problems as well. Kate left the hospital were among the 100 guests who
in February, 2000. Meghan came home around Easter. attended the Feb. 9 Tim Tebow-sponsored “Night to Shine
Maureen remembers visiting the hospital in the morning on Prom”, hosted by St. Catherine of Bologna Church in
the way to work to hold them. The girls' mother Cathy had Ringwood, NJ. They were so happy to get dressed up and had
early intervention support come to help the girls with their the time of their lives! (see photos)
respective developmental issues. We learned about growth In closing, this story shares the wonderful love and support
hormones, which they started right away. The girls were able of a special grandmother and her grandchildren, plus hope and
to grow and do not have the short stature associated with joy to other families and grandparents of children with Prader-
PWS prior to growth hormone treatment. At age three, Willi syndrome. ■
Maureen took Meghan (Meg) to hippotherapy which helps
with hip movements, to enable her to walk more normally.
We remember her being able to walk down the aisle with her In follow-up to a March/
walker at the wedding of Maureen’s son. When the girls started April 2018 awareness article,
school, Maureen helped during vacations and days off. As they I attended presentations on
grew, new health issues arose. When Meg had her foot surgery, Prader-Willi syndrome given
Maureen stayed with her for six weeks to help with recovery by two Ashley Hall students;
and begin therapy. Maureen became involved in PWSA (USA), also attending was Nichole
and attended conventions to learn more about what could help Carey, (mathematics teacher
her granddaughters. As a quilter, she also created and donated whose niece has PWS).
quilts for convention auctions. During summers, Maureen Biology teacher Allison
was able to send them to Camp Sunshine, a special needs day Bowden includes a section on
camp in Ridgewood. The girls loved camp, its fun activities genetic disorders in the ninth
and stayed with Maureen those nights. They had fun packing grade curriculum. Both Miss Teacher Allison Bowden with
Wickie Fort and Miss Mia student Mia Rogers.
lunches and getting ready for each exciting day. Maureen also
was involved in some camp fundraising. Rogers gave thorough reports including data, studies, and
The girls love to visit the IHOP in Clifton, NJ. All the supporting reference information. Feedback was inspiring
employees there always make a fuss about them and the girls to see these young women prepare well and ask questions;
basked in the attention. Kate is the more voracious reader, they may be our next generation of medical professionals
preferring books to TV. Both girls are without a doubt social “Saving and Transforming Lives”!
butterflys and love to dance. They attend West Milford High Madison Whelpley, a 2018 Ashley Hall graduate, will
School, are in the 11 grade, active in the Color Guard and
th be attending Clemson University, and I look forward to
their community Special Olympics. future presentations on PWS. ■
~ The Editor
As special vacation holidays, Kate and Meg regularly visit
The Gathered View ~ Prader-Willi Syndrome Association (USA) May-June 2018 11Advocacy Training
Exciting Updates to the
Wyatt Special Education Advocacy Training
By Evan Farrar, M.A.
PWSA (USA) is proud to announce the newest webinar training module for the
Wyatt Special Education Advocacy Training (WSEAT):
Free Appropriate Public Education (FAPE)
for Students with PWS: The Legal Keystone
Presented by Perry A. Zirkel, Professor Emeritus of This important new module covers:
Education and Law at Lehigh University. Perry has a • The crucial concept of a Free and Appropriate
Ph.D. in Educational Administration and a J.D. from Public Education (FAPE) - its dimensions,
the University of Connecticut, and a Master of Laws overlaps, and remedies
degree from Yale University. Dr. Zirkel has written • A review, for the first time ever, of
more than 1,500 publications on various aspects of PWS-related case law
school law, with an emphasis on legal issues in special • Key “take-aways” and references
education. • Downloadable FAPE-related resources
More WSEAT Resources for YOU!
Yes, the WSEAT now includes:
• Tip sheets for parents, medical • An expanded and updated additional
professionals, PWSA (USA) chapter resource section. Now people can dig even
leaders, and others, to equip every audience deeper into special education advocacy
to get the most out of the WSEAT. issues of interest.
The WSEAT is the Prader-Willi syndrome community’s one stop shop for special education
advocacy. It is free and available 24/7 at https://www.pwsausa.org/wseat-webinar-series/ ■
Note: Evan, formerly a PWSA (USA) family support counselor, is a WSEAT consultant.
Ninth Annual Hunter Lens Golf Tournament
Join us! On Saturday, June 2nd, 1:00pm, at the Back 9 Golf Club (http://www.thebacknineclub.com/) in Lakeville, MA
come have fun to support Hunter and our worthy cause. All proceeds are being donated to Prader-Willi Syndrome
Association (USA). In 2017, we raised over $30,000 (8 year total: $130,000+). Thank you for your generosity. These
proceeds help promote and fund research, provide education, and offer support to enhance the
quality of life of those affected by PWS.
Help us continue to raise awareness and support for this worthy cause in many ways:
Hunter
• Come join us for fun, laughs, 18 holes of golf, plus dinner, raffles and a silent auction.
• Non-golfers: please join us for a great dinner, drinks, raffles and a silent auction (4PM).
• Not able to join us, but want to help? Donate online by clicking the link below, or send a
check directly written out to PWSA (USA) and mail it to Jon Hunter at 22 Beechtree Drive,
Lakeville, MA 02347.
• Also, if you would like to donate raffle items such as gift baskets, sports autographs / tickets,
trips, restaurant gift certificates, etc. for the silent auction, please email Lori and I directly.
Last year the auction provided MUCH of the profits of the event and all generosity is greatly
appreciated.
• Pass this on to anyone you feel may be interested in playing or donating as well!
Donation and Registration: https://www.firstgiving.com/pwsausa/hunterlensgolfouting
Thank you for supporting Hunter and PWSA (USA). ~ Lori and Jon ■
12 May-June 2018 The Gathered View ~ Prader-Willi Syndrome Association (USA)Organization View
Advocacy Update
By Thomas Conway, Esq., Advocacy
PWSA (USA) Advocacy Alert Network,
the proposed legislation failed to become
letter addresses recent efforts by some
states to create formulary restrictions
law. We anticipate future proposals limiting coverage for drugs for patients
Committee Chair, PWSA (USA)
by Congress in this area and we will participating in the Medicaid program,
The following is a summary of recent
continue to oppose any effort aimed at as well as efforts to restrict coverage for
legislative and administrative issues
stripping protections for persons with drugs granted approval through the
that are important to the Prader-Willi
pre-existing conditions and/or cutting FDA’s Accelerated Approval Program. ■
syndrome community.
funds for the Medicaid program which is
State Legislation Regarding vital for our community.
Prader-Willi Syndrome
Orphan Drug Act
Through the efforts of the Prader-
In 1983, Congress enacted the
Willi Alliance of New York, the In Remembrance
Orphan Drug Act (ODA), which allows
New York State Chapter of PWSA drug manufacturers to claim a tax credit It is with sadness that we share
(USA), New York State has enacted of fifty percent of the costs of qualified the passing of Louise Greenswag,
legislation that will ease access to clinical research and drug testing of who dedicated her
needed supports for those with Prader- drugs for rare diseases, defined as life to improving
Willi syndrome. Previously, eligibility diseases affecting fewer than 200,000 the lives of
for supports through the New York Americans. Since its enactment, the those with
Office of Persons with Developmental ODA has played a critical role in the Prader-Willi
Disabilities (OPWDD) was based on development of drugs for rare diseases. syndrome and
several criteria, with a low IQ score and More than 3,500 potential treatments their families.
limited adaptive (self-help, community have been designated as orphan drugs, Louise had a
living, communication) skills being the and more than 500 orphan therapies special gift of
foremost considerations. The new law have been approved by the FDA. In the communicating
acknowledges the reality of Prader-Willi decade before the incentives provided the difficult realities
syndrome and makes the diagnosis by the ODA, only ten medicines were and critical behavioral management
of PWS the primary consideration in developed for rare diseases. techniques in a supportive manner.
determining eligibility for support and In its proposed Tax Cuts and Her pioneering work underpins
services, rather than a test score. Jobs Act (TCJA), the U.S. House of today’s standards.
On April 2, 2018, the Governor Representatives completely repealed the Louise organized and co-edited
of Colorado signed legislation adding ODA. PWSA (USA) joined with over the first definitive PWS textbook:
Prader-Willi syndrome to the definition 200 other patient advocate organizations Understanding Prader-Willi
of an “intellectual and developmental in opposing the proposed repeal of Syndrome in 1988; she served on the
disability” for the purpose of receiving the ODA. In the final version of the PWSA (USA) board of directors
services and supports. Congratulations to TCJA enacted by Congress and signed from 1985-1997 and co-organized
the Prader-Willi Syndrome Association by the President, the tax credit for the first international conference
of Colorado for its tireless efforts in drug manufacturers to develop orphan on PWS in The Netherlands in
advocating for the enactment of this law. drugs was reduced from 50% to 25%. 1991, giving rise to IPWSO, the
Colorado is now the ninth state to have Although our lobbying efforts did not international PWS organization.
enacted this important legislation. result in a complete restoration of the Louise generously and ofter shared
Affordable Care Act ODA, they played an important role in her knowledge and expertise at
Recent Congressional attempts ensuring that the ODA remains in effect. decades of U.S. conferences, chapter
to repeal provisions of the Affordable Medicaid Formulary Access and meetings, and globally traveled to
Care Act (Obamacare) would have State Concerns Regarding train families and professionals on
dramatically impacted the ability of Medications Approved Via FDA’s the special needs of PWS.
persons with pre-existing conditions to Accelerated Approval Program In her memory, a Louise
obtain health insurance coverage and PWSA (USA) joined with 125 patient Greenswag Memorial Fund has
would have reduced expenditures for organizations representing persons been established at PWSA (USA) to
Medicaid by hundreds of billions of with rare diseases in a letter to the celebrate all that she has given us.
dollars. As a result of an unprecedented State Medicaid Directors in every state Click http://bit.ly/2zNEb1Cpwsausa
lobbying effort by patients and patient expressing concerns regarding patient and select “in memory of" ■
advocates, including members of the access to innovative new medicines. The
The Gathered View ~ Prader-Willi Syndrome Association (USA) May-June 2018 13Organization View
Giving Back with Prader-Willi syndrome. Kathryn
became active with PWSA (USA) in
By Kathryn Lucero early 2015 when she realized that there
Giving back to the PWS community was not much support in her home state
is something many of us enjoy doing of New Mexico. Kathryn wanted to help
by ways of fundraising, volunteering in other families who felt the weight of the
various capacities, and becoming a vital new diagnosis, and is able to provide them
part of the organization. Some volunteers with support and encouragement. During
enjoy the relationships that develop when this time, Kathryn also was enrolled at
meeting another family. The Parent the Institute for Integrative Nutrition. To
Mentor Program was created to give back receive her Integrative Health and Wellness
in a big way. Certification, she was given the opportunity
A Parent Mentor is someone who Kathryn with son Ronan.
to “Intern” for PSWA (USA). She began
provides support throughout the journey This year, the Parent Mentors will writing articles for The Gathered View
of a newly diagnosed individual and their meet in Tennessee, with lots of exciting beginning September 2015 and through
family. A Mentor’s “job” is not done news and speakers on the agenda. These her articles, reached and bonded with
when the child hits a certain age; they are meetings allow mentors to meet one other families going through similar
part of that family’s life. It goes beyond another, share ideas and experiences, and circumstances.
being discharged from the hospital, build lifelong friendships. Kathryn connected with the Parent Mentor
and the tough times of therapies, If you are curious to learn more or program that provided encouragement and
feedings, etc. Parent Mentors provide interested in becoming part of the Parent support to her and her family. She quickly
support, encouragement and resources Mentor Team, please contact Diane Seely was able to do the same with other families
to the families and a life changing bond at dseely@pwsausa.org or contact the in the community. Kathryn now balances
between that mentor and each family is PWSA (USA) national office. Thank being: a Chapter Leader for New Mexico
typically made. you! (while living in CO), a Parent Mentor,
We are looking for mentors! Could a PWSA (USA) Brand Ambassador, but
you be one? All resources that may About the Author: most importantly, her role as Ronan’s mom.
need to be given to the new family are Kathryn Lucero is the proud mother of Kathryn considers herself a strong advocate
provided by PWSA (USA), who works four-year-old Ronan and supportive wife for those with PWS and will continue to
hand in hand with mentors to provide to her husband Armando. Her journey make a footprint in the hearts that she
them with resources and education to began on January 21, 2014 when their reaches. Thank you Kathryn. ■
share confidently the support to their son Ronan was born and later diagnosed
families.
Nexus Children’s Hospital Announces Program Restart
Changes Health & Wellness Program reopens to treat underserved pediatric population
Nexus Health Systems restarted Chief Medical Officer. “We provide a Nexus Health Systems President Erin
their national Changes Health and safe, structured environment where these Cassidy explained that services for this
Wellness program in January, 2018, at children and their families learn behavior patient population can be difficult to
Nexus Children’s Hospital, in Houston, management strategies and coping find. “My hope for the recommencement
Texas. The program offers support and skills.” of our program is that we’ll be able
treatment for patients with Prader-Willi The program’s safe, structured to provide treatment that delivers
syndrome (PWS), providing care for environment addresses medical and great outcomes for our patients and
patients with other weight management- behavioral complications of patients with their families. We were able to help so
related illnesses. PWS. Individualized physical training many patients when our program ran
“Our inpatient program is one of and behavior support is among services previously, and I have confidence that
the only available in the country for available for children, while family our multidisciplinary team can do the
children with PWS,” said Dr. John members receive education and training same this time, too.” ■
W. Cassidy, Nexus Health Systems to continue successful management at
Founder, Chief Executive Officer and home.
14 May-June 2018 The Gathered View ~ Prader-Willi Syndrome Association (USA)Our Mission: Deadlines to
To enhance the quality of life submit items
of those affected by PWS. to The
Gathered View:
8588 Potter Park Drive, Suite 500 Dec. 1; Feb. 1;
Sarasota, Florida 34238 Apr. 1; June 1;
800-926-4797 ~ 941-312-0400 ~ Fax 941-312-0142
info@pwsausa.org www.pwsausa.org Aug. 1; Oct. 1
Staff and Key Contacts Officers & Directors
Steve Queior, Chief Executive Officer Chair - Michelle Torbert, Homestead, FL Leon D. Caldwell, Ph.D., Washington, D.C. Stephen Leightman, Cherry Hill, NJ
Debi Applebee, Business Manager Vice-Chair - James Koerber, Corydon, IN Mitch Cohen, Weston, CT Rob Lutz, Bryn Mawr, PA
Secretary - Julie Doherty, Tallahassee, FL Thomas Conway, J.D., Albany, New York Tammie Penta, Oro Valley, AZ
Kate Beaver, M.S.W., C.S.W., Alterman Crisis Intervention
Treasurer - Denise Westenfield, Eden Peter Girard, Townsend, TN Marguerite Rupnow, Oconomowoc, WI
and Family Support Counselor Prairie, MN James Kane, Baltimore, MD Rob Seely, Dublin, OH
Rikka Bos, Development and Chapter Relations Specialist
Kathy Clark, R.N., M.S.N. CS-BC, Coordinator of Medical Scientific Advisory Board (SAB)
Affairs Chair - Merlin G. Butler, M.D., Ph.D., Kansas University Medical Center, Kansas City, KS
Lorraine Hickok, Communications Specialist Chair Emeritus - Vanja Holm, M.D., University of Washington, Seattle, WA
Jackie Mallow, Convention Coordinator Suzanne B. Cassidy, M.D., University of California, San Francisco, CA
Mary Cataletto, M.D., Prader-Willi Center at Winthrop University Hospital, Mineola, NY
Lori Moline, New Parent Support Specialist Anastasia Dimitropoulos, Ph.D., Case Western Reserve University, Cleveland, OH
Jai Ojha, Systems Support Specialist Joe Donnelly, Ed.D., University of Kansas, Lawrence, KS
Cheryl Plant, Administrative Assistant Elisabeth M. Dykens, Ph.D., Vanderbilt University, Nashville, TN
Ruby Plummer, Volunteer Coordinator Andrea M. Haqq, MD, MHS, FRCP(C), FAAP, University of Alberta, Edmonton, AB Canada
Ann Manzardo, Ph.D., Kansas University Medical Center, Kansas City, KS
Diane Seely, New Parent Support Coordinator
Sue Myers, M.D., St. Louis University, St. Louis, MO
Kristen Starkey, Accounting Clerk Robert Nicholls, D. Phil., Children’s Hospital of Pittsburgh, Pittsburgh, PA
Stacy Ward, M.S. Crisis Intervention and Family Support Deepan Singh, M.D., NYU Winthrop Hospital Mineola, NY
Counselor Stefan Stamm, Ph.D., University of Kentucky, Lexington, KY
Devon Young, Development and Communications Specialist David A. Stevenson, M.D., Stanford University, Palo Alto, CA
Rachel Wevrick, Ph.D., University of Alberta, Edmonton, Alberta, CN
Barbara Y. Whitman, Ph.D., St. Louis University, St. Louis, MO
MEMBERS ONLY:
Access our Website: www.pwsausa.org for Clinical Advisory Board (CAB)
downloadable publications, current news, Chair - Daniel J. Driscoll, M.D., Ph.D., University of Florida Health Science Center, Gainesville, FL
research, and more. David M. Agarwal, M.D., Indiana University School of Medicine, Indianapolis, IN
The Members Only section requires a password: Moris Angulo, M.D., Prader-Willi Center at Winthrop University Hospital, Mineola, NY
member20 Merlin Butler, M.D., Ph.D., Kansas University Medical Center, Kansas City, KS
Suzanne B. Cassidy, M.D., University of California, San Francisco, CA
E-mail Support Groups: We sponsor nine groups to share Gregory Cherpes, M.D., The Department of Human Services, Pittsburgh, PA
information. Go to: www.pwsausa.org/egroups Marilyn Dumont-Driscoll, M.D., Ph.D., University of Florida Health Science Center, Gainesville, FL
Janice Forster, M.D., Pittsburgh Partnership, Pittsburgh, PA
The Gathered View (ISSN 10 77-9965) Linda Gourash, M.D., Pittsburgh Partnership, Pittsburgh, PA
Sara Dwyer, Editor Roxann Diez Gross, Ph.D., CCC-SLP, The Children’s Institute, Pittsburgh, PA
Lota Mitchell, Andrea Glass, Denise Servais, Kathryn Lucero Jim Loker, M.D., Bronson Methodist Children’s Hospital, Kalamazoo, MI
Jennifer Miller, M.D., M.S., University of Florida, Gainesville, FL
The Gathered View is published bimonthly by PWSA (USA). Sue Myers, M.D., St. Louis University, St. Louis, MO
Publications, newsletters, the Website, and other forms of Todd Porter, M.D., M.S.P.H., Kids Care Clinic, Denver, CO
information and communication are made possible by our Ann Scheimann, M.D., M.B.A., Johns Hopkins School of Medicine, Baltimore, MD
Harold J.P. van Bosse, M.D., Shriners Hospital for Children, Philadelphia, PA
generous donors. Consider a donation today to help ensure Barbara Y. Whitman, Ph.D., St. Louis University, St. Louis, MO
the continuation of these resources. Liaison Members
Kathy Clark, R.N, M.S.N. CS-BC, Coordinator of Medical Affairs, PWSA (USA)
The information provided in The Gathered View is intended
for your general knowledge only and is not intended to be Professional Providers Advisory Board (PPAB)
a substitute for professional medical advice, diagnosis or Co-Chair - Patrice Carroll, L.C.S.W., Latham Centers, Brewster, MA Ex Officio Member - Jackie Mallow, Root Connections
treatment. Always seek the advice of your physician or other Co-Chair - Mary K. Ziccardi, REM Ohio Consultative Services, LLC
Steve Drago, The Arc of Alachua County, Gainesville, FL Liaison Member - Stacy Ward, M.S., Family Support
qualified healthcare provider with any questions regarding
Barbara (BJ) Goff, Ed.D., Professor, Westfield State University, MA Counselor, PWSA (USA)
a medical condition. Never disregard professional medical Marguerite Rupnow, PWHO, WI
advice or delay in seeking it because of something you have
read in this publication. Special Education Advisory Board (SEAB)
Chair - Amy McTighe Tammie Penta Liaison Kate Beaver, PWSA (USA) Family Support Counselor
Barbara (BJ) Goff, Ed.D. Mary K. Ziccardi Member
Tanya Johnson
Adults with PWS Advisory Board
Co-Chair - Shawn Cooper, Georgia Brooke Fuller, Michigan Conor Heybach, Illinois Kate Kane, Maryland
Co-Chair - Andy Maurer, South Carolina Lauren Lange, Georgia Abbott Philson, Maine Trevor Ryan, California
The Gathered View ~ Prader-Willi Syndrome Association (USA) May-June 2018 15You can also read
