Tributes to Anita Macaulay
Here are just a few of the tributes posted on our website following the news of the death on 11th May 2006 of Anita Macaulay founder director of the Jennifer Trust.
“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 family 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 - Patron
“The quality of a person's life is not measured by the number of breaths they take, but the by number of times they take your breath away. Anita with her inner strength and compassion had the ability to do this. She was always willing to listen to someone with a problem, ready to help someone in need and able to care of those in distress. She wasthere for us like a bright light, illuminating our darkest of days and showing by her words and actions that we were not alone. For this we will always be grateful. A very
special person who touched the hearts of so many people; our memories of you will be treasured.
Anita may your God bless you.”
“Anita was a very special person who was so caring about affected families and passionate about curing SMA. She never failed to drive us scientists on and the progress we have made is in many ways is due to the commitment to SMA that Anita encouraged us to show. Over more than a decade she has been a colleague and a friend. Her legacy will result in a treatment of SMA one day and we will never forget her. Her family will remember her in many ways ‐ she made a difference to so many lives. I shall never forget her smiling face and all those working with SMA will never forget what a difference she made. I am fortunate to have known and worked with her.”
“I met Anita only the once, some weeks ago. Afterwards, I knew everything that needed to be known about SMA, local politics and her family!! Her boundless enthusiasm and involvement were infectious. I have seldom met anyone so determined or driven as Anita, she was unique.”
“If there is anything in Heaven which needs improving, then Anita is the woman.”
“There are many people who have been touched by Anita, be thankful that you were one
of them.”
“May Stuart and the rest of the Family gain strength and fortitude from the love and
admiration from so many towards Anita.”
“My family and I have been greatly saddened and shocked by Anita's passing, my condolences go out to Anita's family and everyone that was close to her. I have been a member of the JTSMA since it started and cannot show enough gratitude to how much I have been supported through my life by the practices of the organisation that Anita built. I can remember attending the annual meetings when I was a child and Anita's exuberance and friendliness still sticks out in my mind, as well as her constant willingness to help me and my family come to terms with my condition. All the hard work that Anita has put in to the JTSMA has produced outstanding results and we all feel proud of what she has achieved after dealing with such tragedy of her own. Any advancements in the future of SMA research will be significantly based on Anita's hard work which will never be forgotten. It is a great tragedy to lose someone who was genuinely so determined to make so many peoples life better, and there are not enough people like this in the world today, however we should celebrate the wonderful work that she has done, truly a great role model, and carry it on with the same spirit and caring way that Anita did.”
“For making a genuine difference to the many lives that you touched during your life's quest. For Holding out a hand of friendship in our time of need and for giving all our little angels a voice. We will always be eternally grateful to you Anita.”
"The world will be a less sparkling place without the personal presence of Anita, but I believe Anita's essential essence will survive to drive us all on to keep up the fight to find a cure, and support those of us who live with SMA. We all certainly owe it to one of the most wonderful ladies of our time, to continue with the challenges that she has taught us how to face. I can only imagine that Heaven is buzzing, that Anita has all the Angels working overtime to inspire, guide and support us, to try and achieve all that Anita
wants us to. I am sure that Anita will be making use of all her newfound celestial powers to show the way forward. Anita's infectious laugh, winning smile, and sparkling personality will now light up the skies, and remain in my heart forever. I can honestly say that I would not have found my smile, if Anita had not given me hers. What a gift you gave me, Anita. Thank you for giving me back the joy of
motherhood. God Bless.”
