NAILED IT! - LAMPost AUGUST 2018 - LAM Action
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AUGUST 2018 LAMPost NAILED IT!
From the Editor’s Desk Welcome to the Summer 2018 edition of LAMPost, a little later than anticipated, but we hope the wait will have been worthwhile! It’s been an amazing summer so far with lots of good weather, lots of good football and of course another LAM Action Annual Meeting which took place in Leeds on June 9th. This was in keeping with the pledge we have made to hold the meeting in various parts of the country to make attendance easier for people who might not have been able to make it to Nottingham in the past. There are reports from the meeting in this edition and we hope those of you who didn’t manage to make it to Leeds will find these interesting. L-R Simon Johnson, Jan Johnson, Jill Pateman, LAM Foundaton CEO Sue Sherman and Leanne Lillywhite-Sutton We are pleased to announce that the 2019 Annual Meeting will be held in the LONDON area on Saturday June 15th 2019 so please make a note in your diaries, and we hope to see lots of you there. More details will be announced soon.
Some other dates for your diaries: Sunday August 19th will see the Family Fun Day at Bilton Cricket Club in Harrogate which promises to be a great day out for all the family. This has been organised by Chelsea Ashman and we send our thanks to Chelsea and all her family for all their hard work on behalf of LAM Action. 2019 will also see the return of the hugely successful Black and White Ball on Saturday September 28th, at the lovely venue of Chateau Impney in Droitwich. The ball is once again being organised by LAM Action Chair Leanne Lillywhite-Sutton and LAM Action Secretary John Thompson. More details of both events can be found in this issue of LAMPost. Chateau Impney, venue for the 2019 Black and White Ball in aid of LAM Action Remember if you are going to organise a fundraiser or an awareness event for LAM Action then please visit our website where we have a helpful guide and some tips to make sure your event has the maximum impact. We would also like to support you in any way we can with promotional materials etc. and publicise it on our social media channels. Even if you don’t need any help, please let Jill Pateman know about your event so that we can say thank you to you. Talking of fundraising we have again been overwhelmed by the efforts of all our fundraisers, notably the Fantastic Four who completed the London Marathon back in April in sweltering heat, and James Pemberton who also had to endure the heat when he ran the Derby Half Marathon. A big mention also to Alice Walker who recently completed the 5k Great North Swim on Lake Windermere and will be taking part in the Great North Run on September 9th.
James Pemberton Alice Walker By the time we go to press we will have also seen Ride London on Sunday July 29th and we send thanks to our 4 riders who represented us this year in the gruelling 100 mile challenge. Details on our riders can be found on our Facebook page and website and we will hope to have a full report on their efforts in the next issue. There are of course lots of other smaller fundraising efforts taking place all the time and we are very grateful to everybody who has raised money and awareness on our behalf. We already have some runners signed up for next year’s London Marathon and have some Gold Bond places remaining so if you are inspired to take part, please contact David Mercer (see back page). Finally, a reminder that the deadline for the Autumn edition of LAMPost is October 1st so we would appreciate anything you can send us by that date to our email address: lampost@office.lamaction.org. We hope that you will enjoy this edition and wish you all a lovely rest of the summer. Best wishes from the LAMPost team, John, Francesca and Grazyna
Sunday
August 19th
1.00pm -
6.00pm
Bilton Cricket Club,
Bilton Lane, Harrogate
HG1 3DQ
Knaresborough Mobile Discos & Roadshows • Childrens
Festival Make Up & Nails • Bouncy Castles • Tombola
• Sweet Tombola • Cake Stalls • Food & Drink • Aunt
Sally Wet Sponge Throw • Painting Pots for Children •
Facepainter • Penalty Shootout • Ice Cream Van
Raising money for LAM Action - a non-government funded UK charity for those
with Lymphangioleiomyomatosis (LAM), their families and the doctors caring LAM ACTION
for them. LAM is a chronic rare lung condition; funds raised will be used to Supporting women with
finance crucial research to help find a cure. Lymphangioleiomyomatosis
Thanks to our main event sponsors:
Thanks also to our other sponsors:
Presentation by Prof. Simon Johnson on LAM Basics at the 2018 LAM Action Annual Meeting As in previous years, our annual meeting was preceded by a presentation by Prof. Simon Johnson on LAM Basics. Although aimed at the newly diagnosed and their families, it provided an excellent, up-to-date summary of LAM, presenting the most recent research and findings from around the world. Therefore its content should be of wider interest to everybody in the LAM community. • LAM is rare. Currently, around 350 women in the UK are thought to have LAM. • There are two variations of LAM. Sporadic LAM, in which LAM presents on its own, affects around 5 in every million. The other type, TSC LAM, develops in people with another disease, tubular sclerosis (TSC). At age 20, 10% of people with TSC will have LAM, but by age 40, 80% will have LAM too. However most TSC- LAM sufferers will not have any symptoms. • LAM almost exclusively affects women. This is due to the female hormone oestrogen. LAM cells respond to oestrogen by growing more quickly and spreading around the body. So increased oestrogen levels - whether arising because of pregnancy or oestrogen- containing medication (such as certain contraceptives
and HRT) - is probably bad for LAM. Conversely, LAM
seems to slow down after the menopause.
• What happens in LAM. There is a build-up of abnormal
(LAM) cells in the lungs and lymphatics. Unlike normal
cells, LAM cells don’t stop growing, and they cause
damage to lung tissue and cause cysts to form.
• LAM-related problems:
o Pneumothorax (collapsed lung) – Cysts can leak
air, which leads to a collapsed lung. Pneumothorax
in LAM can sometimes be difficult to treat.
o Chylous effusion – LAM cells can block lymph flow,
in the lungs and in other lymph channels.
o Abdominal LAM – Two thirds of women with LAM
have enlarged abdominal lymphatics. In most,
this causes no symptoms, but around 10% have
abdominal problems.
o Angiomyolipoma – These are benign tumours,
usually occurring in the kidneys. Around half of
women with LAM will have an angiomyolipoma.
Most are small and don’t cause symptoms, but
those over 4cm in diameter are at greater risk of
bleeding. They are easily detected by CT or MRI
scans or ultrasound. A kidney tumour plus a CT
scan showing cysts on the lung suggests LAM.
• The age and presenting symptoms of women when
first diagnosed has evolved through time. In the
literature pre-2006, the average age of women at
diagnosis was 35, compared to 49 in a 2016 UK
LAM Centre study. Pre-2006, the primary presenting
symptoms were split almost equally between
pneumothorax (around 40%) and breathlessness
(40%), whereas in the 2016 study pneumothorax was
the primary presenting symptoms for half of the newly
diagnosed women, with breathlessness accounting for
only a quarter.
• Symptoms of LAM. Some women with LAM experience
no symptoms. There is a great variance in the extent to
which women experience symptoms. Symptoms can include breathlessness; wheezing; chest pain; cough (which may be associated with infections, or in which blood or chyle can be coughed up); abdominal bloating, swelling and discomfort; and fatigue. Fatigue is very common in women with LAM. Note that many of the symptoms of LAM are similar to those associated with other conditions such as asthma and smoking-related diseases. • What happens as time passes? LAM is a progressive disease, but it is a SLOW progressive disease. In general, without treatment, lung function will decline and breathlessness will increase. However, a significant breakthrough for women with LAM was the discovery that the drug rapamycin (also known as sirolimus) can slow the decline in lung function dramatically. In general, where someone’s lung function is declining rapidly, treatment with rapamycin should be considered. This is starting to have a positive impact on the severity of symptoms, and thus quality of life. Survival rates are also far more positive. Studies are now showing a median survival of 29 years from first symptom and 23 years from diagnosis. 10 years after diagnosis, 86-91% of women are alive. These figures are likely to continue to improve as the use of rapamycin to treat LAM increases. • How should I be monitored? Women diagnosed with LAM should be monitored regularly, with a medical review every 3 months to 1 year. At these reviews, lung function tests should be performed; the most relevant for LAM are FEV1 (which sees how quickly you can empty your lungs by measuring the volume of air you can blow out in one second) and the TLCO / gas transfer test (which sees how well your lungs are able to take up oxygen from the air you breathe). Kidney scans should be performed every 6 months to 2 years (frequency is dependent on whether you have any angiomyolipomas and if so, how big they are; bigger
angiomyolipomas tend to grow faster). Pneumothorax,
infections and other problems should be monitored
and treated as symptoms dictate.
• Drug treatments for LAM:
o Effective
- Bronchodilators (e.g. salbutamol) may reduce
breathlessness
- Rapamycin (sirolimus) reduces decline in lung
function and reduces the size of angiomyolipomas
o Being tested
- Statins, choloroquine, saracatinib, metformin
o Probably ineffective
- Tamoxifen, progesterone, GnRH agonists
o Ineffective
- Doxycycline
• What can I do for my LAM?
o DO Gain knowledge - Look out for pneumothorax;
angiomyolipoma; infections. Understand about
appropriate vaccinations; pregnancy.
o DO Consider pulmonary rehabilitation – Ask your
GP or respiratory unit whether there are classes in
your local area.
o AVOID Smoking
o AVOID Oestrogen (HRT or contraceptive pill)
• Other Do’s and Don’ts
o DON’T let chest infections drag on
o DO see your doctor urgently or go to A&E if you
experience significant chest or flank pain
o DO discuss pregnancy with your physician before
pregnancy
Gill Hollis
Summary of Sue
Sherman’s keynote
presentation, LAM
Action Annual
Meeting, June 9th
2018 in Leeds
The “Secret Sauce”
We were very fortunate to be joined by Sue Sherman,
Chief Executive Officer of the U.S.-based LAM Foundation.
Sue gave an uplifting talk, which is available on YouTube at
https://www.youtube.com/watch?v=rXDcr3aPLpM for
those people who missed it or would like to hear it again
in full. A few of the highlights – including Sue’s “secret
sauce” -- are summarised below.
Sue has been CEO of the LAM Foundation for the past
five years, and spent the previous 28 years working
in hospital administration and managing non-profit
organisations in the healthcare sector. She is not a
clinician nor a scientist, had no connection to LAM prior
to joining the LAM Foundation and considers her work
with the Foundation to be the most significant work
she has done throughout her career.
Sue provided a brief overview of the progress that has
been made with LAM. She compared the early days to a
sprint, because urgent action was needed, as opposed
to the current situation which might be more akin to
a marathon as we continue to work toward a cure for
LAM. Sue also noted several parallels between the LAM
Foundation and LAM Action. Both organisations have
been helping women with LAM for about 20 years, by
bringing together clinicians and women with the disease
since the 1990s and by funding research.The US LAM patient database lists 2,200 people with LAM in the United States. Over its history, the LAM Foundation has raised approximately $25 million, $14 million of which has funded research. (Sue said later in her presentation that 90% of the LAM Foundation’s $1 million+ annual fundraising comes from women with LAM and their families.) Some of that research involved sirolimus, which was approved by the US Food and Drug Administration in 2015 as a treatment for LAM, making LAM one of just 5% of rare diseases with a recognised treatment. Sue noted that 34 LAM clinics have been established throughout the United States and 25 LAM clinics exist outside the United States, including the National Centre for LAM in Nottingham. Between them, the European Respiratory Society, the American Thoracic Society and the Japanese Respiratory Society, have drawn up treatment guidelines for LAM. Twenty-one groups around the world help women with LAM, and the New England Journal of Medicine has recognised the LAM Foundation as an advocacy group to emulate. The LAM Foundation has three key aims: 1) ensuring good clinical care; 2) funding science; and 3) providing patient support. Critical to the LAM Foundation is what they refer to as the “secret sauce”: the magic that happens when you bring together caring doctors and scientists with women who have LAM and their carers and let them interact with one another. In the United States, these meetings started with just 11 people and two doctors in a church basement in Cincinnati. They have progressed to around 300 attendees at meetings that are held around the United States. Recent meetings have been held in conjunction with other rare lung disease conferences, and scientists have seen synergies between some of the diseases. Sue stressed the importance of engagement by women with LAM. For example, 250 women returned a 10-question survey about the challenges of living with
LAM. Their answers were distilled down to six key topics that were discussed at a “Patient Benefit Conference” the LAM Foundation organised in November 2017. The key topics were: 1) biomarkers and imaging for LAM; 2) supplemental oxygen and LAM; 3) exercise and LAM; 4) fatigue; 5) coping and mental wellness, and 6) clinic experience and patient-reported outcomes. Women with LAM led discussions on each topic and were then joined by doctors and scientists to discuss potential funding ideas to address issues identified by the women. The LAM Foundation is funding research areas identified through these workshops, including a remote control device to control oxygen flow. Its Scientific Advisory Committee is currently evaluating 10 grant requests generated by this patient-led process. Sue also described the LAM Foundation’s “patient liaison” programme. In the United States, the LAM Foundation works with 34 women with LAM, who are in charge of a region of the country. These women are volunteers who host events for women with LAM in their region, reach out to women who have been newly diagnosed and help communicate messages from the LAM Foundation. The LAM Foundation reaches 300- 400 women a year thanks to this liaison programme, which connects women and their families to a local network of hope, information and resources. Sue refers to these regional liaisons and the local connections they are creating as the “new flavour of the secret sauce.” Sue mentioned a few other women with LAM who have made significant recent contributions to the LAM community, including Sarah Poitras, who with her husband created a travel blog about travelling and raising awareness about LAM (www.travelbreatherepeat.com), and Sharlene Dunn, who started a mentoring programme and support group for families who are nearing transplant. Sue stressed that as we pursue other treatments and a cure for LAM, patient-driven initiatives will be more important than ever. She encouraged women with
LAM and their families to stay vigilant about raising money and keeping connected. We all need to share of ourselves and our talents in order to keep moving forward. Kelly Vance
LAM Action Annual
Meeting, June 9th
2018 in Leeds
Research Update
This year the research update consisted of three brief
overviews on different aspects of research.
Firstly Sue Sherman, CEO of the LAM Foundation,
described how the research programme in the US had
developed over the last 20 years. Sue Byrne, whose
daughter has LAM, was the initiator and by a happy
chance found Frank McCormack, a clinical scientist in
Cincinnati, who she persuaded to pursue research into
LAM. Funding research was their over-arching priority.
The initial focus of research involved animal models,
leading to the exciting discoveries which justified the
first big clinical trial of Rapamycin (MILES); this showed
that Rapamycin slowed the progression of LAM. There
are now 7 studies in progress in the US including one
on the effects of inhaled Rapamycin, and one on the
use of low dose Rapamycin at an earlier stage of the
disease. In addition to clinical trials, other studies
are analysing data already collected, and carrying out
qualitative analyses of patients’ clinical experiences.
The LAM Foundation has spent 7 million dollars on
research to date.
Secondly, Simon Johnson talked about a new approach
to LAM, which is to try to make use of the body’simmune system to fight LAM cells (an approach being used in some patients with breast cancer). LAM cells damage the lung and hence it might be expected that the immune system and T cells in particular would rise to the challenge and attack LAM cells. They have shown that T cells are present in LAM tissue, including angiomyolipomas, but their activity appears to be inhibited at ‘check points’, thus allowing LAM cells to grow. The hope is that by blocking these ‘check points’, T cells would be more effective. Simon also talked about another immune cell known as natural killer cells. These would normally attack cells which are stressed such as LAM cells but compounds released in blood appear to prevent this by acting as decoys. Current work is trying to interfere with these ligands. The third speaker was Debbie Clements who looked at how patient samples are used in the laboratory in Nottingham. The team has found many type 2 alveolar cells around the cysts and nodules. Normally these cells line the alveoli (the numerous small air pockets at the periphery of the lung where oxygen is taken up) and are responsible for renewing epithelial cells as they wear out. By growing these alveolar cells from LAM patients in chambers they have shown that the cells are very active both in terms of growth and in secreting substances they don’t normally produce. They are able to measure factors produced by the cells and study the effect of various compounds on the growth and migration of these cells, in the hope they will be able to inhibit their activity. They are also looking at clumps of lung in 3D which is a more realistic model. This work could not be done without the generous donation of tissue by patients, and Debbie thanked all those who have helped in this way. Anne Tattersfield
London Marathon 2018 This year, four runners took on the London Marathon to raise funds for LAM Action on a day when the weather conspired to make it a bigger challenge than they could ever have imagined. Three of the runners were women and two of them came from the Durham & Teesside branch of Business Networking International (BNI). Gill Sawdon, who is an Executive Director for BNI, and Kerri Ann Hudson, a Chapter President, member and gym owner, completed what was the hottest London Marathon on record in times of 6:28:18 and 6:28:19, respectively. They heard about LAM Action’s places through another BNI member who lives in Sussex, Jeanette Mercer – sister-in-law of Julie Mullins, who has LAM. Afterwards Gill, a keen runner, cyclist and open water swimmer, said: “It was an amazing day and experience, with great support every step of the way. I was overwhelmed by smashing my target and so honoured to help LAM Action.”
Kerri Ann, who owns the Bodytalk for Ladies Gym in Northallerton, also completed the London Marathon in 2017. She said: “I was delighted to get a place through LAM Action, as I know that every penny we raise will really be making a difference.” David Lord, who works as Head of Construction at Burnley College, completed the 26.2 mile course in a time of 4:59:42, Afterwards he said: “I’m very happy. I’m glad that I’ve done it. I would have liked a better time, but considering the weather and how hot it has been, I’m glad I’ve achieved it.” David, 40, has previously run in four marathons and decided to run the London Marathon in support of LAM Action because his friend Matt Sharples’ wife, Sarah, has LAM and had to have a kidney removed as a result. Sarah is LAM Action’s Treasurer. “I really wanted to support her and support the charity, and I’d always wanted to do the London Marathon. Having done four marathons before I really wanted to do one of the world’s biggest ones,” he said. David’s wife Mandy, a district nurse, and his three daughters: Elise, 15; Cameron, 12; and Harper, aged five, travelled to London to support him. To train for the event David got up at 5am every day from Monday to Friday before going in to work at Burnley College. David has already signed up to take part in next year’s London Marathon for LAM Action, using one of the Golden Bond places that the charity has to offer. His message to anyone thinking
of taking part “Just get up and do it… and have a go!” Jeanie Hughes, an Essex mum of five and Billericay Parkrun regular who works as a staff nurse, finished in a time of 6:29:12, running in a multi-coloured tutu and with her fingernails painted in the green and purple colours of LAM Action. She was inspired to run by her friend Clair Hemmington, who has had to undergo two double lung transplants as a result of LAM, and was in London to support Jeanie. Jeanie said afterwards: “With every mile I ran, I knew I was raising another £50+ in Clair’s name for the amazing charity LAM Action...and sponsorship is still coming in! That’s an amazing feeling that keeps you going when you are hurting.” She recalled: “London was everything I hoped it would be. The runners were so friendly and supportive, the cheering and generosity of the crowds just blew me away. Surreal that I hugged a random stranger because he had a bucket of ice cold water for runners to dip their wrists in and soak their buffs and towels etc... The runners in fancy dress... well, I just have no idea how they survived! Members of the public handing out sweeties and fruit segments, ice cubes, icepoles, refrigerated wet wipes and sun cream. Never been so happy to see a gloved hand holding out hot melty globs of Vaseline and gratefully scraping it from their fingers as you run past.” Jeanie’s training was affected by a knee and wrist injury caused by slipping on ice in December, after which she spent
three weeks in an arm cast and a further four in a brace. Recalling other moving moments during the event, Jeanie said, “The emotion of turning the corner around mile 13 and seeing Tower Bridge...yes, I cried! The wall of sound as you go through the Isle of Dogs! Running round a corner at mile 19 and seeing Clair cheering me on. Never seen Clair so animated… that lovely hug made me cry again! The ’Run Mummy Run’ cheer squad less than a quarter of a mile later... again, more tears! The run down the Mall... almost there... runners giving each other so much support. Some fab guy carrying another runner’s shoes because she was hobbling in pain barefoot but determined to finish... making sure to swipe them close to the timing mats so her progress was recorded. Runners being propped up... arms draped over shoulders with amazing pep talks getting them to the finish... Seeing that finish line… Nothing can prepare you for that amazing sight and for the tears you just can’t hold in as you cross it knowing that after so many years of dreaming of it, you’re finally a London Marathoner!” If you feel moved by these stories to put on your running shoes and take part in next year’s London Marathon, please contact david.mercer@office.lamaction.org The current total raised by the four LAM Action runners is £9651 – if you would like to increase that by supporting any of them here are their fundraising pages: To sponsor Gill: https://uk.virginmoneygiving.com/GillSawdon To sponsor Kerri Ann: https://uk.virginmoneygiving.com/KerriAnnHudson1 To sponsor David: https://uk.virginmoneygiving.com/david-lord-SAVMLMBONDS3332018-849436 To sponsor Jeanie: https://uk.virginmoneygiving.com/JeanieXHughes
SUPPORT GROUPS UPDATE You may recall that in the last edition of LAMPost the Co- ordinators of all our new and existing groups invited anyone with LAM to get in touch and go along to one of the LAM Action Regional Support Group meetings. The new West Midlands Group has met and hopefully will go from strength to strength. Things have been a bit slower to take off in the north, but hopefully after some matchmaking and speed dating at the Annual Meeting in Leeds, the groups in the north (or maybe just one group if that works better) will be able to make arrangements to meet. I know Andrea or Bron would be delighted to hear from anyone who is interested in meeting for lunch or coffee and a cake. Their contact details, along with those of all the other Co- ordinators, are at the bottom of this piece. Leeds was obviously a good place for making contacts, and fortunately one of our members, Alex McDonald, was at the meeting and has kindly volunteered to Co-ordinate a group in the South West. Alex’s photo is below, together with an
introduction from her. So if anyone in the South West would like to get in touch with others with a LAM diagnosis in the area, do get in touch with Alex, and I know she will be delighted to hear from you. Quite often when I’m contacted by people who have just been diagnosed with LAM they are experiencing feelings of isolation. We all know how rare LAM is and it’s unlikely that on diagnosis you will know anyone else with the condition. We have a brilliant group of people who are always ready to step in and have a one-to-one chat when someone has been newly diagnosed and feels that would help. But others would like the opportunity to meet with a wider group 2 or 3 times a year to share experiences, and also to have a pleasant time in good company. So if you’re wavering about getting involved, just take the plunge and I can guarantee you’ll be made to feel very welcome. Best wishes, Jill Pateman South West: Alex McDonald Hello, my name is Alexandra McDonald (Alex) and I live in Wellington, Somerset. I would love to meet other women with LAM in the region and am happy to act as coordinator or to arrange meetings, get togethers etc. whatever suits others. I was diagnosed with LAM in 2009, aged 47, following a period of increased breathlessness and haemoptysis. Like many of us the initial shock of being diagnosed and lack of information and support was very scary. It wasn’t until I found LAM Action that I had any real support and help. With the help of others I began to understand the disease and was able to manage my condition both physically and psychologically. Fortunately my symptoms are mild and whilst I also have a renal tumour (AML) I am stable and manage to keep fairly active with my horses and dogs.
There aren’t many of us in the South West, and though I have tried to raise awareness of LAM through the media with interviews and talks, it would be great to get a group going to share experiences and provide support. I’m hoping that with more women being diagnosed each year new and existing LAM patients will want to be involved, even if it’s just for a chat with coffee and cake. Cake is always a good idea! Please feel free to contact me, my email address is: Alex. mcdonald8@btinternet.com Look forward to hearing from you! Alex Other Regional Co-ordinator Contacts: London & South-East: Sarah Wood, email: sarah.whitefield@hotmail.co.uk West Midlands: Leanne Lillywhite-Sutton, email: leannelillywhite1983@gmail.com / tel: 07585 325575 M40 Corridor: Lucy Falconer, email: lucytf@hotmail.co.uk North West: Andrea Jones, email: andreaj25@outlook.com / tel: 07905 567227 North East: Bron Thurston, email: bron.thurston@gmail.com
Melbourne Meet-Up
The 15 ladies I had lunch with in March. Four of the ladies in
this photo are post-lung transplant.
I spent a couple of months in Australia earlier this year
with my husband, Peter. During our stay in Melbourne,
I was privileged to be invited to the twice-yearly meet-up
of women diagnosed with LAM who come to The Alfred
Hospital for their check-ups. So in the middle of March I
joined 15 lovely ladies for lunch on the shady patio (it was
summer there!) of a café close to the hospital. As with
every other LAM gathering I’ve attended, I was made to
feel very welcome by a fantastic group of people. Many
thanks to them all and in particular to Heather Telford for
including me!
Gill Hollis
With Heather Telford (left), former chair of LARA (LAM Australia
Research Alliance), who organised the lunch.The Ultimate Underground Challenge L-R: Lauren Parkinson, Ally Thornhill, Lucy Wood (with her tube lines scarf), Katharine Bindloss Hi I’m Lucy and my Mum has had LAM ever since I was two-and-a-half. Since then, I haven’t been able to do active activities with my Mum like most children do. When I was ten-and-a-half, I thought it would be good to travel a few stops on each London Underground line for fun, but that soon changed. About a year later, my Dad said I should do it for LAM Action, so I got my notepad and pencil and started to plan a route. I thought I had finished, ending up at Victoria, but then I realised I had forgotten the District line, which would have meant we’d end up at Westminster to take the Jubilee line home. The next day at school, I asked my three best friends from Year 6, Katharine, Ally and Lauren if they would like to come with me and do the challenge with me. They all said yes to my delight, so I tweaked the route and knitted a scarf with all the colours of the lines, and we were set to go. On the morning of the challenge, I packed a drawstring bag with plenty of food and water to keep us going throughout the day. I attached my action camera to my body to film our challenge, and my Mum and I made our way down to the station, where we were waited for Katharine, Ally, Lauren and Emma (Katharine’s Mum) to arrive on a train from
Amersham. But as my Mum was sorting out her Oyster card in the ticket hall, their train came in, and by the time we got through the barriers, the doors closed! My Mum arranged by WhatsApp to meet them at Harrow. Once we successfully met at Harrow, our first change was at Baker Street where we got on the Circle line to Moorgate. The Northern line at Moorgate was very loud and the most crammed of all the lines we went on. Luckily, we were able to take a break at Euston before getting on a Southbound train via Charing Cross to Waterloo. At Canary Wharf we stopped for lunch at Pret a Manger before getting on the Jubilee line to continue. At the end of the challenge, we agreed that the DLR had the nicest view and the Overground felt really nice with the air conditioning. The worst lines we went on for that day was the Northern line or Piccadilly due to the sweaty crammed carriages of the trains. Thanks to your support, we have managed to raise £1600 on our Just Giving page that is open until October 2018: www.justgiving.com/fundraising/lucy-lauren-katharine We couldn’t have completed this challenge without your support. Thank you! Lucy Wood
Black & White
Charity Ball
Saturday 28th
September
2019
The Chateau Impney Hotel,
Droitwich Spa, Worcestershire,WR9 0BN
Arrive 7:00pm for Welcome Drinks, Carriages at 1.00am
Ticket prices before 31st Dec 2018: £60 per person/£550 per table of 10
Ticket prices after 31st Dec 2018: £65 per person/£600 per table of 10
Ticket Inclusions:
• 3 course meal with coffee & mints
• Welcome drink
• 1/2 bottle of wine per person
• Car parking
• Entertainment & disco
An auction & raffle will also be held during the evening.
Standard bedrooms available from £55 bed &
breakfast, upgrades also available at a supplement.
Call the hotel on 01905 774411 and quote
‘LAM Action Ball’ to access our negotiated rates.
To book tickets or for further information, please
email: lamball2019@gmail.com
LAM ACTION
Search LAM Action Black & White Ball Supporting women with
on Facebook
LymphangioleiomyomatosisThe next edition of LAMPost will be out in November 2018 with a deadline for submissions of October 1st - thank you! LAMPost Editor John Wood Sub-editors Grazyna Dobosz and Francesca Cook lampost@office.lamaction.org LAM Action Chair Leanne Lillywhite-Sutton LAM Action Co-ordinator Jill Pateman jill.pateman@office.lamaction.org Donations: Sarah Sharples finance@office.lamaction.org For postal donations, please make cheques payable to “LAM Action” and send to: Jill Pateman, LAM Action Coordinator LAM Action, Nottingham Voluntary Action Centre, 7 Mansfield Road, Nottingham NG1 3FB For online donations, visit uk.virginmoneygiving.com/charities/lamaction www.justgiving.com/lamaction Medical Team Professor Simon Johnson Professor of Respiratory Medicine Director of the National Centre for Lymphangioleiomyomatosis University of Nottingham, D Floor, South Block, Queens Medical Centre Nottingham NG7 2UH Professor Anne Tattersfield anne.tattersfield@nottingham.ac.uk London Marathon / Ride London David Mercer Surrey House, Peaslake Guildford, Surrey GU5 9RL david.mercer@office.lamaction.org
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