Will White Fund: Support the Accelerated Cure Project and Find the Causes and Cures for the Neuroimmunologic Disorders
Gena White

We are asking you to support a research effort that is incredibly important to our family.  This research effort is the Repository Program being led by the Accelerated Cure Project for Multiple Sclerosis and Transverse Myelitis. 

When Will was about five months old, I was changing his diaper and noticed that his legs seemed limp.  I immediately called his doctor and he told us to go to the emergency room.  The ER physician told us that Will had a fever and sometimes a fever can cause a child’s body to become limp.  We were sent home.  We went to see Will’s pediatrician the next day and he immediately checked us into the hospital.

He was in the Pediatric ICU for two days while they ran every test possible.  They finally concluded that it was Transverse Myelitis.  TM is a rare disorder which can sometimes make it difficult to diagnose.  The ACP Repository is so important, because it is focused on finding the most effective ways to diagnose TM and the other neuroimmunologic disorders.   

Will was put on a high dose of steroids to try to stop and/or reverse the effects of the Myelitis.  Fortunately, it did stop the Myelitis from spreading any further up his body, but it did not reverse the effects.  Will is paralyzed from the waist down and has to be catheterized every 2 ½ hours to make sure that his bladder is completely emptied and to prevent any kidney damage.   He goes to physical therapy and occupational therapy once a week to build up strength in his stomach and back muscles to help with his stability. 

Other than the inability to walk, he is a typical two year old.  He does not seem to listen when told to do things and he gets everywhere and into everything.  Being on wheels makes catching up with him a bit harder, and he usually gets a head start.

The ACP study was kind enough to include Will, and we feel very strongly about supporting their work and their goals.  They could find a cure for TM.  Finding this cure would spare other families from going through our experience; what we have been through and the challenges we continue to experience today.  We had never heard of Transverse Myelitis until Will was diagnosed.  We are committed to a greater awareness of TM in the general public.  We are also committed to research which would facilitate the diagnosis of TM and could result in more rapid and effective acute treatments. 

The Accelerated Cure Project for Multiple Sclerosis and Transverse Myelitis is a national nonprofit organization whose primary effort is the creation of the world’s largest openly accessible collection of bio-samples ever assembled for use in MS and TM research.  Through collaboration with The Transverse Myelitis Association, blood samples and data are being collected from individuals with MS, TM, NMO, ON and ADEM, as well as controls across the United States.  These samples and data are then being made available to researchers investigating the causes of these diseases.  The short-term goal of ACP is to collect samples from 1,000 people.  ACP intends to continue enrolling subjects with a long-term goal of recruiting 10,000 participants. 

The Repository program gives researchers immediate access to far more samples than they could collect independently and allows them to conduct experiments of a size and scope not possible otherwise.  Through this type of sharing and collaboration, the MS and TM research communities can effectively multiply the value of their important research. 

According to Dr. Ben Greenberg, Assistant Professor and Co-Director of the Johns Hopkins Transverse Myelitis Center, “The approach taken by the Accelerated Cure Project is a long overdue effort to collect the vital information and specimens from people necessary for research such as mine to be fruitful.  A concerted effort to expand this project will undoubtedly lead to benefits not just for patients with MS and TM, but for science in general.”

We believe in the work of the Accelerated Cure Project.  The total cost of creating and managing the initial 1,000-subject phase of the repository is $2.5 million.  We need your help!  With your support and the support of others who wish to see a cure for MS, TM, and the other neuroimmunologic disorders we can make a real difference.

Please send your contribution to the Will White Fund for the Accelerated Cure Project for Multiple Sclerosis and Transverse Myelitis.  Please send your check made out to the Accelerated Cure Project and mail it to: "The Will White Fund,” Accelerated Cure Project, 300 Fifth Avenue,
Waltham, MA 02451. As ACP is a registered not-for-profit, your donations are tax deductible to the extent permitted by law and IRS code. 

Should you wish to donate $1,000 or more, there is currently a special program in place through which this gift can be matched.  The Water Cove Charitable Foundation has pledged to match any gifts of $1,000 or more, up to $1 million total and to double match any gift of $1,000 or more that is pledged for three years.  These gifts and the matching funds are restricted to the repository program.  A gift of any size is greatly appreciated. 

If you would like additional details about Accelerated Cure Project’s work and progress, a copy of its annual report can be downloaded from www.acceleratedcure.org or provided to you upon request.  Further details about the repository program can also be found at:  http://www.acceleratedcure.org/repository/  

We hope you will join us this year in supporting efforts to accelerate the cure for TM, MS, ADEM, NMO and ON.  Our family would greatly appreciate any support you can provide. 

Thank you!