SPONSORING WITH HEART - Barth Syndrome Foundation
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SPONSORING WITH HEART
Since 2000, Barth Syndrome Foundation (BSF)
has been the only global network of families,
healthcare providers, and researchers solely
driven by the mission to address the unmet
needs in Barth syndrome.
OUR MISSION
Save lives through education, advances in treatment,
and finding a cure for Barth syndrome.
OUR VISION
A world in which Barth syndrome no longer causes
suffering or loss of life.
MASTERING THE ART OF SELLING PRESENTATION
People with Barth syndrome deserve a fighting chance
Joe Alfie
Did you have any symptoms? What does it feel like when you get tired?
I was always very thin. I was about 5’6” until I was a senior but then I really I have a heavy feeling. It’s like your mind wants to do something but your body
grew [...]. I am 6’3” now. tells you no. I have learned over the years that you can’t keep going when your
body is depleted. No good comes from trying to go on. The farther over the line
I had a mitral valve repair in 2001 when I was twenty, and the surgeon you push it, the harder it is and longer it takes to recover. It’s best to rest when I
diagnosed me with Marfan syndrome. Around Halloween of 2018 I came need to. I learned [that] when I was young.
down with a cold, or what I thought to be a bad cold. [...] I went to Cleveland
Clinic to be seen. They arranged for me to have a catheterization and pretty Can you think back on a definitive moment when you said, never again,
much told me that I wasn’t leaving until I had a transplant. I had a heart never will I push myself that hard again? What was the breaking point?
transplant on my 44th birthday in 2019. I used to go to youth group on Sunday night. It was only for a couple of hours. I
would just run and run and run, playing the games. I was having so much fun. I
So what prompted you to go through with genetic testing? pushed myself, somehow thinking if my mind pushed my body harder, I could
Marfan affects girls and boys. I have children. My wife and I wanted to go go on. I couldn’t. I pushed myself to exhaustion. I spent the next few days in
through with genetic testing to confirm that I had Marfan syndrome. We bed totally shattered. At that point I said never again. I learned that I could still
wanted to know for a fact because we needed to know how that could affect enjoy my life without pushing myself beyond my limit.
our children and how it might affect their children. I don’t think anyone
expected the findings to come back as Barth syndrome, not even the doctors.
Barth syndrome ICD-10: E78.71 Barth syndrome (BTHS; OMIM #302060) is a serious X-linked genetic disorder, primarily affecting males. It is caused by a mutation in the TAFFAZIN gene (G4.5), resulting in an inborn error of lipid metabolism.
BARTH SYNDROME 90% of the BTHS population experiences heart
failure or cardiomyopathy, increasing the risk
IS A COMPLEX, MULTI- of arrhythmias that can lead to cardiac arrest.
SYSTEM DISORDER Neutropenia occurs within 85% of individuals
with BTHS and is a leading cause of death due to
THAT POSES LIFE- sepsis.
THREATENING All muscles, including the heart, have a cellular
deficiency which limits their ability to produce
CLINICAL CHALLENGES energy, creating extreme, life-altering fatigue
in more than 50% of individuals.
ACROSS THE LIFE Serious hypoglycemic events in childhood as
CYCLE. well as the onset of type 2 diabetes are common
in BTHS.
Failure to thrive due to growth delay and
extreme nutritional challenges occurs in a
majority of diagnoses.
There is currently NO approved treatment for Barth syndrome
Current clinical management strategies
Skeletal
Cardiology Hematology Growth & Psychosocial
Myopathy &
Nutrition Functioning
Fatigue
Heart failure medication Neutropenia precautions when Consultation with dietician Physical therapy
acutely ill School accommodations
Cardiac transplantation when Occupational and feeding Optimize nutrition, hydration, and
failure is severe/intractable G-CSF therapy therapy sleep Step 3
Developmental assessments
ICD and/or anti-arrhythmic Antibiotic prophylaxis Gastrostomy placement for Mobility assistive devices
2019
therapy persistent feeding/poor weight
gain
Management of prolonged QT
interval as clinically indicated
(Thompson et al., 2021)
2020
Distinguished Symposium Speakers
Speakers
Treatment and Quality of Life
for Barth Syndrome
Cardiac Pathophysiology of
Barth Syndrome
Cardiolipin in Physiology
Basic Biology of Barth
Syndrome
2022 speakers will be announced in May 2022
The 2022 Scientific & Medical Virtual Symposium
July 21 - 22, 2022
We anticipate this year's event will mirror the 2022 Symposium, which had over
300 total viewers composed of presenters and attendees from across the world
demonstrating the global breadth of the Barth syndrome (BTHS) community of
patients, families, researchers, and clinicians.
Your participation in “Sponsoring with Heart” is vital to the success of the
#BSFSciMed2022 Symposium. Your sponsorship will not only make it possible to
create a virtual environment aimed at advancing scientific discoveries to address
#Barthsyndrome. It will also create unique opportunities for international
scientific collaborations necessary to give people living with Barth syndrome a
chance to access life-changing therapies.
Sponsoring with Heart Maximizes Your Impact #BSFSciMed2022 is the ONLY INTERNATIONAL EVENT solely targeting R&D in Barth syndrome. > 50 leading researchers and clinicians from multiple countries feature advancements in their research and care management approaches 4 topic sessions cover the range of basic biology, pathophysiology, symptomology, and quality of life and clinical care standards of our ultra-rare disease Your sponsorship allows BSF to offer a NO-COST REGISTRATION, attracting interdisciplinary researchers to focus their talents on Barth syndrome. Facilitate and explore opportunities for collaborations and innovation to address the complex, multi-system aspects of Barth syndrome 2 poster sessions cultivate engagement with emerging talent and novel concepts for discovery science and potential treatments for Barth syndrome Attendees NETWORK DIRECTLY with world-renowned clinicians and researchers as well as have the unique opportunity to experience first-hand patient narratives. Interactive format allows participants to expand their networks and access thought leaders Incorporate the Patient Voice as a critical part of R&D strategy
Sponsoring with Heart
Become a Sponsor for #Barth2022 and #BSFSciMed2022
Sponsorship Presenting Sponsor
$15,000
Champion Sponsor Hope Sponsor Community Sponsor Session Sponsor
$2,000
$12,500 $10,000 $7,500
Level 1 Opportunity 2 Opportunities Unlimited Unlimited 3 Opportunities Each Day
(6 Opportunities)
Prominent logo placement
Recognition during the opening &
closing remarks
Logo placement in a e-program
Logo placement on the event
website page
Logo placement on marketing and
communications
Logo and description on the sponsorship
area of the virtual event platform
Recognition on social media channels 4 3 2 1 1
Option to sponsor a session
Option to contribute to the
virtual swag bagThank you! www.barthsyndrome.org
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