Seeking a cure and improving quality of life for those who live with multiple sclerosis.
Multiple Sclerosis is a chronic and often debilitating disease of the central nervous system that affects 400,000 people in the United States. The Foundation believes that encouraging innovative research on MS is vital to understanding the causes of the disease, developing effective treatments, and eventually a cure. At the same time, the Foundation realizes that those currently living with MS deserve services that will help them retain their best quality of life.
Of patients diagnosed with MS, the majority are diagnosed with Relapsing/Remitting MS. Eventually these patient’s disease course moves to Secondary-Progressive MS. A small subset of patients are diagnosed with the more progressive and debilitating form of the disease from the outset. The major types of MS are listed below.
- Relapsing/Remitting MS: Characterized by a series of attacks followed by remissions, during which functionality is restored, with attacks typically lasting 4-6 weeks.
- Secondary-Progressive MS: Patients with originally relapsing-remitting MS develop a gradual decline, which can be accompanied by attacks
- Primary-Progressive MS: Characterized by a progressive decline in functionality, without distinct remission periods
- Progressive-Relapsing MS: Characterized by a progressive decline coupled with acute attacks
While the majority of patients are first diagnosed with Relapsing-Remitting MS, almost all will see their disease turn into Secondary Progressive MS. At this stage in the disease, the nervous system starts to breakdown, causing an onslaught of slowly worsening symptoms and disability.
The Foundation focuses the majority of its funding efforts on the understanding and treatment of progressive MS. While advances have been made in discovering treatments for Relapsing-Remitting MS, the same has not occurred for progressive MS. At the same time, those with progressive MS face challenges in their day-to-day lives that stem from the worsening of their disease. The Foundation is committed towards helping those with the disease live their best lives in the present and funding research aimed at stimulating innovation and advancing knowledge that will aid in the development of treatments and eventually a cure for progressive MS.
Our Funding Priorities in Research
1) Fund young promising scientists: By funding young, promising scientists, the Foundation can make a significant contribution to the field for years to come. Funding these scientists helps ensure that they will remain in the field of MS research. More fundamentally, it is these researchers who often have the breakthrough ideas that can help push the field forward.
2) Fund research into biomarkers and infrastructure that benefit the field as a whole: The field of MS research and ability to meet FDA testing standards has been hampered by a lack of biomarkers and tools such as patient registries. Often, this type of research and groundwork is not funded by pharmaceutical companies or the NIH as it does not directly lead to medical breakthroughs or profits. Despite this, the field as a whole, including pharmaceutical companies, would benefit from advances made in these areas.
3) Fund translational research aimed at finding treatments and a cure for Progressive MS: Given that funding for truly breakthrough translational research has declined overall, the limited funds that the Foundation can spend can potentially make a difference in this area. Since all current and most potential new treatments focus on curbing the relapses in Relapsing-Remitting MS, Foundation funding for treatments for Progressive MS and the neurological damage it causes has the potential to create substantial change in the quality of life for MS patients. Even though treatments may not pose a true cure for MS, the possibility of treating and reversing the neurological damage the disease causes could provide a functional cure. Because the Foundation does not have the financial pressures that pharmaceutical companies and venture capital face in treatment development, we can play an important role in treatment development. The Foundation could access expertise in this area by partnering with larger pharmaceutical companies.
Our Funding Priorities for Patient Services
1) Fund programming at the Marilyn Hilton MS Achievement Center: The Marilyn Hilton MS Achievement Center provides a meaningful tribute that honors the memory of Marilyn Hilton, Barron Hilton’s wife, who was afflicted with MS for many years prior to her passing in 2004. The Center encompasses the Foundation’s belief in how wellness programming improves the quality of life for people living with MS. The Foundation’s continued funding of the Center should also encourage the Center to continue the development of innovative programs and ways to deliver these programs to people.
2) Fund ways to bring wellness programming to more people with MS: Wellness programming is not available to many people living with MS, especially the disadvantaged. Since the costs of opening numerous MS Achievement Centers would be prohibitive, the Foundation should look for ways to bring this kind of programming to more people paying special attention on ways to focus on underserved and disadvantaged populations. Funding would include advocacy efforts to ensure that the major payers of health care allow billing for these services, as well as ways to explore how technology would make some of these services more accessible.
3) Fund programs and fellowships to encourage doctors into the MS field: With fewer doctors choosing to enter the field of neurology and fewer within that group choosing to specialize in MS, those with MS may find a doctor shortage a serious impediment to receiving quality care. The Hilton Foundation can help ensure quality care for those with MS by finding ways to encourage doctors to enter neurology and helping remove some of the barriers to doctors entering the field.