Messages: 1-20 21-40 41-60 61-80 81-100 101-120 121-140 141-160 161-180 181+
Your messages about Anita Macaulay, founder of the JTSMA, following news of her death on 11th May 2006.
Anita was one of the first people we talked to when our son Matthew was diagnosed with SMA 18 years ago. She filled us with hope and determination to help Matthew fight his condition. It is so hard to understand why Anita, who was so full of life and with such great purpose has been taken early.
Our thoughts and prayers are with Anita's family and friends at this very sad time.
The Turk Family
I only spoke to Anita once on the phone, when I first heard about the Jennifer Trust.
Having SMA myself it was so nice to hear that someone was so inspired to pull together such a wonderful organisation to support people who are often isolated by this condition.
Anita, your light shined brightly and will continue to do so.
Love,
Carole
News of Anita's sudden death came as a great shock to me. Only a couple of weeks ago we had an animated conversation on the forthcoming 21st birthday conference of the Jennifer Trust, and discussed a special award, The Jennifer Trust 21st Birthday Award, for the best presentation on SMA by a young scientist at this year's annual World Muscle Society congress in Bruges, where SMA is one of three main topics.
When I first met Anita in 1985 at my muscle clinic, I had the difficult task of gently breaking the news to her that her delightful firstborn daughter Jennifer, who had been progressing so well in the first weeks of life, had been struck down by the severe form of spinal muscular atrophy. When Jennifer died, Anita felt not only tremendous grief at the loss of her daughter, but also a sense of total isolation, as she did not know anyone personally with a similar experience to share her grief with. So at Jennifer's funeral she resolved to start a support group for the parents of infants with SMA. This was the start of the Jennifer Trust. With Anita's tremendous drive and determination it gradually grew into one of the largest muscle-oriented charitable trusts in the UK, dedicated not only to the initial goal of family support, but also to funding research in spinal muscular atrophy. The annual weekend conference of the Jennifer Trust has provided both an academic forum for an update on clinical management and basic research, and also an opportunity for mutual support and social interaction between SMA families.
Anita was an exceptional person who touched the lives of many people. She was one of a very small number of remarkable individuals I have had the pleasure and privilege of knowing, who had such unusual vision and determination and drive to contribute something positive and special to society and the world.
The Jennifer Trust will be a lasting memorial to Anita's vision, energy, and dedication.
Victor Dubowitz
What a cruel loss, Anita has given so much to so many through the JTSMA and in her own contacts and family life.
I hope that the Members and Trustees will carry on the good work, and that those closest will offer assistance and condolences to Pam,ron, Stuart and the rest of her family.
Geoff Parr (ex-chair)
What a huge loss of a wonderful lady , who was there for me and my family eleven years ago when my son was diagnoised with S.M.A. type one . God Bless You Anita
Glynis, Allan and family
We are both deeply shocked and saddened by Anita's passing. She was such an inspiration to us with the diagnosis and passing of our own daughter, Amber. We often look at the brood of children we have now (4 boys and a girl-all free from S.M.A.) and think that if it wasn't for Anita's tireless campaign for answers with this dreadful condition, we would not have had the opportunity to have them. Anita gave us the choice that we otherwise would not have had.
God bless this remarkable woman. I am sure she will be at peace with her beloved daughter, Jennifer who would have been with her mum every step of the way whilst in this world and will accompany her in the next one.
Thanks you for everything.
Lara and Trevor Springgay xxxxxxxxxxxxx
Both Jason and I are in total shock at the sad news of the passing of Anita.
Anita and all the staff at JT office have been of great support to us and our family.
Although we met through tragic circumstances, we feel blessed to have known her.
Much love to Anita's family and all at the JT office.
Laura Pike & Jason Turk
We are deeply shocked and saddened to hear the terrible news of Anita,s suddenth death. Anita was our first point of contact back in 1998 when our first daughter Briony Joy was diagnosed with SMA Type I, we thank her and all at JTSMA for all of the hours of support and for the toys and chair that helped make Briony's little life so happy. Anita will remain in our prayers always.
Martin & Dawn, Verity and Elysia Maughan,
Bournemouth, England.
We are all so sorry to hear of Anitas passing, even though I had never met her, the support we as a family received from the team at Jennifer Trust when our darling grandson Daniel was diagnosed with SMA type 1 last May and during his short but sweet lifr is a lasting tribute to what she founded.
God Bless her and her family at this very sad time
Jill and Derek Stoneham (Grandparents)
Marc and Lisa Adamson (Parents)
I was shocked and sadden by the news of Anita's death.
Through my time as a contact individual and ex-committee member I was always amazed by her energy, thoroughness and knowledge to move the Trust forward to where it is today. She was an inspiration and gave great support to many people.
She gave us the Jennifer Trust and in her memory we must keep it going to provide "Help for Today and Hope for Tomorrow".
My thoughts are with those in the office, friends and especially her family
Laura Wilson
I only met Anita once but I could see at that time that she was a person devoted to helping those affected with SMA. I know from my contact with families that she will be sorely missed. I desire that the JT carries on with the same dedication and enthusiasm that Anita brought. Please let me know if there is anything I can do.
Best wishes,
Martin Chainani
We're sorry for what had happened. We might have been new in this web but we have learned so much from you guys. We really appreciate all the information to us. Our condolences, but we're sure that the help she gave to the foundation give so much meaning to her life. The people who have been touched by her would be forever in their hearts. Rest assured that all her wholehearted giving will be remembered and treasured by everyone in SMA and those who received her help without asking for anything in return.
Michelle
We were greatly saddened by the news. Anita has been a rock to thousands of people over the years and especially to our family when we lost our beloved grandaughter Briony Joy Maughan, seven years ago from SMA Type 1 at just 9 months old. We were helped enormously by the love and support of Anita and the Jennifer Trust and we could never thank them enough for all their encouragement. Our hearts go out to Anita's family, friends and work colleagues. She was our shining light and will never be forgotten.
With much love and thanks for everything from Bill & Carol Johnson, Bournemouth, England.
From the Residents of Moreton Paddox.
We were not connected to Anita by SMA but through Anita's role as a Ward Councillor. Her commitment to SMA was also reflected in her unstinting commitment to the members of the community she served beyond the Jennifer Trust.
We as a small section of that community had cause to experience Anita's total dedication to providing help, guidance and support. It is with sadness that we learned the news of her passing, we shall miss her infectious enthusiasm as will no doubt many others.
Our thoughts go out to Stuart and Anita's family at this time.
Tony Webb
On behalf of the two Residents Committees in Moreton Paddox
We were both shocked and saddened by the sudden pasing of Anita. In our eyes, she was an amazingly corageous soul. I'm sure we speak for everyone who's lives she touched when we say we owe her so much If it wasn't for Anita's courage after the devistating loss of her own child, we wouldn't have had the love and support we've recieved from 'her' Jennifer Trust in our darkest hours since Eleri's diagnosis a year and a half ago.
We never had the pleasure or priviledge to meet or even share a telephone call with Anita, but it still feels like we have lost a family member.
Our hearts go out to all of those who were lucky enough to be close to this wonderful woman. She will be sadly missed.
The Feenan Family
Words cannot express the deep sadness that I felt on hearing the news of Anita today. I joined the JT 17 years ago and her friendship and countless support during my journey with SMA is immeasurable. She was and always will be close to my heart.
Much love to Stuart, her family and all at JTSMA.
Sarah (Howard) x.
With sympathy, Andrew Boulton,
Pat and Richard Elwen
We were so saddened this morning to hear from the Trust of the sudden death of Anita.
When my sister lost her daughter Francesca 10 years ago Anita was there to support us within hours of her passing. We were pleased to meet her when we were in Stratford a couple of years ago.
Time has healed much of the pain. However, we have always known that the Trust is there to support all those who suffer from SMA and that the Trust values every life touched by this awful illness.
Our love and prayers are with you all.
Andrew and Noeleen Bell
London
I have sat her now for 15 minutes reading all the wonderful messages from all around the world.
My message comes from just around the corner.
This news came as a great shock to myself and my family. We have known Anita for nearly 20 years and in that time we have watched Anita acheive so many of her goals, the most closest being the Jennifer Trust.
My daughter Nikki sends special thoughts at this time to Stuart whom she baby sat for many years ago and then enjoyed his company at Youth club and Day Camps.
The love of my whole family goes out to Stuart and all of Anita's family including the Browns as family does not just come from blood.
With all our love
Sandie, Paul, Nikki and Lora Feltham, (Wellesbourne) xx
I am saddened to here the news about Anita. She was a very special person who will be missed by everybody associated with JTSMA.
Jean Bedson (Greenwood)
Messages: 1-20 21-40 41-60 61-80 81-100 101-120 121-140 141-160 161-180 181+
| 
