Transverse Myelitis Society

Minutes of 5^th AGM and 21^st Meeting London Support Group 25^th April 2009

At EC Harris HQ, 34 York Way, Kings Cross London N1 9AB

Attendees: Jean Anthony (Treas), Ros and Adrian Gallagher and baby Evan, Pete Garbett, Lew Gray (Secr), Terry Glover and friend Paul, Nick Heal and Ruth, Yvonne Kolesar (Chair) and Simon, Therese Loh, Joan Murphy, Rob Reeves and Silvana, Sally Rodohan and Sean, Carmel Rodohan, Dafydd Thomas

Apologies received from: Wilma Atherton, Barbara Babcock, Mary Bergin, Clare Blake, Farshideh Bondarenko, Heather Brierley, Piers Bryant, Karen Corr, Marion Darville, Sally Dray, Jodie Douglas, Margaret Duggan, Angela Dunbar, Geoff Godman, Bob Leach, Ken Matheson, Sandra Mitchell, Cathy Mayer, Cally Page, Jack Pennington, Sandra Rawbone, Eileen Robinson, Samantha Rowe, Prof. Scadding, Martin and Linda Stanley, Rob and Jane Stevens, Julie Umerle, Davena Wilson

1. After some excellent sandwiches and chat, Sally the current Chair gave a history of the first 5 years of TM Society, and gave a thank-you to Committee members and Support Group leaders around the country. Notable achievements over the past year included
• first-ever TM research project by Dr Anu Jacob at Walton Centre
• initial contacts with UK neuros: Dr Jacob and Prof Scadding
• large increase in membership from 467 to 608

Our basic job was providing information and support to TMers and this continues, with often 20 new members a month in UK, receiving New Member Welcome Packs by email now. Lew had taken over sending New Member Packs from Geoff Treglown, who sadly passed away in August 2008. Janet Ashenden is assisting with posting NMPs to Germany.

2. In 2009 we planned to

• continue our contacts among neurologists and other professionals
• continue to promote awareness of TM
• improve fundraising
• organise a 2^nd TM Conference in 2009, with improved UK participation

3. Lew Gray gave a brief report on Dr Anu Jacob’s research project at Walton Centre, reviewing 200 cases of TM to look for hard evidence about treatments and prognosis for TM. Lew also mentioned Denise Fitzgerald’s new immunology lab at Queens University Belfast – Denise was a TMA member from Ireland who got TM at university and became a research immunologist working on remyelination and MS. Lew gave a special thank-you to Yvonne and Simon Kolesar who had backed the TM Society with so much assistance with the 2007 Conference, providing an excellent venue at ECHQ for meetings, and also raising £7k from Simon’s parachute jump.

4. Jean Anthony (Treasurer) presented the 2008 Accounts. Jean had recruited an accountant friend to help her and he had designed an Excel-based automatic Cashbook system. A large number of donations had been received from members and families – special thanks to Mattie Chambers’ son Ian at Barclays in Glasgow, Zoe Brown’s fiancé Francesco and Eileen Anderson’s daughter Julie Johnson running Half Marathons, Kathy Wright’s partner John Bedford retirement, Chris Clansey birthday and Lisa Mann Switch Sizes events. Simon Kolesar raised a massive £7k by his skydive, which will appear in next year 2009 accounts.

5. On the spending side, we provided £2000 in donations to Johns Hopkins Project Restore and £5000 so far for Dr Anu Jacob’s research. We provided several hardship grants for TMers, and also travel grants to assist families with TM kids to attend the TM Kids Camp in USA. We had over £18k in the bank at the end of 2008 plus Simon Kolesar’s donations to come, although £9k was also committed forward for research, travel grants and donations in 2009.

6. Jane Stevens resigned from Committee during 2008. Therese Rodohan was not standing for re-election due to her new baby. Carmel Rodohan was willing to stand for re-election for another 3 years, and Farshideh Bondarenko (physiotherapist) and Prof John Scadding (neurologist) were also nominated, seconded and elected to join the Committee. Additional positions on the Committee were still open if any member is interested to join.

7. Sally Rodohan was resigning as Chair after 5 years (but remaining on Committee), handing over to Yvonne. The Committee recommended that we create a new position of President for Sally. All attendees voted to approve these changes.

8. Yvonne the new Chair addressed the meeting and said she felt there was still much to do to raise awareness of TM, and appealed to members to help us with organising fundraising. Yvonne expressed everyone’s heartfelt thanks for Sally’s commitment and dedication to the TM Society over the past 5 years, and lovely bouquet of flowers was presented.

9. Dafydd Thomas a visiting neurosurgeon commented that from his long experience working with the Stroke Association, that TM Society had made remarkable progress for only 5 years of operation. Mr Thomas said other charities have found most of their money coming from legacies and corporate sponsorship (it was important to be a nationwide charity for this). Prof Scadding had excellent contacts from his work at Institute of Neurology and Royal Society of Medicine. But Mr Thomas felt that too many neurologists on the Committee might be counter-productive, but we were wise to recruit other rehab professionals.

10. Following tea break (excellent food provided by Yvonne), the 21^st meeting of the London/Southeast Support Group took place.

11. Yvonne invited the new attendees to tell their stories and this led to lively discussions:

12. Pete Garbett’s girlfriend (now wife) got TM in 2000. She has suffered throughout from terrible banding pain (around trunk) plus fatigue and bladder problems, although she managed to get walking with one stick after 2 years. She has used X-TENS machine for pain, now takes duloxitine which helps, but had to reduce dose to avoid insomnia.

13. Joan Murphy had TM 18 months ago, after a couple of virus infections and a lot of stress at work. She had weakness on one side, went to GP, got better, but then realised while in France that her balance was badly affected. She went to osteopath who sent her to see a neurologist, after her GP was of zero assistance. She suffers from numbness in her feet as well, and now recognises depression. She has tried IV Vitamin C and other alternative remedies, as have most of us. She now can see it’s been a journey mentally, that she is ‘in a better place now.’
14. Sally had TM 50 years ago and has always had balance problems (ie needs to concentrate hard on walking etc). She said she would never have thought anything could be done about it after so many years. But in the last month since she retired, she and Sean (who had a stroke 15 months ago) had started going to Farshideh for physio for him. Since she was there anyway Farshideh suggested that she do some physio too, and Sally was amazed and very pleased to report that she had some immediate improvement, not just from exercises but also through better understanding of eye movement and her compensatory movement patterns! Sean was doing better too.
15. Ros and Adrian Gallagher had come to the meeting with gorgeous new baby Evan! Hugh, their 2 ½ year old boy with ADEM, was doing well with Farshideh, but still couldn’t walk unaided (wore splints). Ros and Adrian had taken him for cranial-sacral osteopathy for past 2 months, and found he had much better energy from it. They were looking for a good pediatric neuro to replace Great Ormond St, who were not contributing anything for Hugh’s recovery. Yvonne would ask Prof Scadding for suggestion and pass on Gallaghers’ email to him.
16. Nick Heal had TM 18 years ago, and met Simon and Yvonne by chance at a dinner. He said he was still numb in his legs and often found balance difficult, particularly cup and saucer. Nick was worried that his strength and gait appeared to be declining as he grew older. (Lew recognises this!)
17. All of us agreed that it was good to learn that depression was physically caused by TM and was not a emotional response to TM – recognising depression was the first step in coping with it.
18. Next meeting will be Saturday 25^th July (NB not 17^th) 2pm at ECHQ