From The President
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During this traditional time of year for giving thanks, I want to take the opportunity to thank each of you for your unwavering dedication to helping us move closer to our vision of a world free of MS. Your relationship with our chapter keeps us moving forward. Your attendance and advocacy, your volunteerism and generosity, your leadership and courage are irreplaceable. Thank you so very much.
We appreciate your trust that we will use all of the resources that you provide as wisely as possible to ensure quality program delivery and research support. I am extremely proud to share with you that the Chapter has again maintained a low 15 percent overhead. However, the Chapter and the Society continually seek to lower costs as much as possible. Among the best ways to control expenses is to work together as an efficient team.
During the past year, the residents of Maine, Massachusetts, New Hampshire, and Vermont have discovered the benefits of joining forces as a single chapter. For example, people who ride bikes can participate in any of eight Bike MS rides with one account. The same applies to Walk MS and to MS programs too. By uniting, we strengthened program services to people with MS and broadened the scope of fundraising. Most importantly, we reduced the overall cost of delivering the mission.
In the same way that people with MS in our four states have seen the benefit of working together, they will also benefit as we collaborate with our sister chapters of the Northeast Region (Connecticut, Rhode Island, Upstate New York, New York City/Southern New York, Long Island, and New Jersey Metro).
The newly formed Northeast Region establishes closer bonds among neighboring chapters, and presents an opportunity to transcend traditional business boundaries and to work together. There is great potential for positive results anytime chapters connect. The possible outcomes include greater buying power, streamlined functions, and greater revenue, in addition to better serving people who have multiple sclerosis. This is not an easy, overnight solution, but thanks to the collaborative process of the Region it is now an ongoing conversation that will in due course yield results.
The most important outcome, however, will be a reduction of costs and the resulting increased spending on MS research and on MS education, support, advocacy, and services. Thank you again for all you have given. I look forward to working side by side with you in 2011.
Gilenya Is Approved
The Era of Oral Drugs Begins
On September 22, the U.S. Food and Drug Administration approved fingolimod capsules for reducing the frequency of MS attacks and delaying the accumulation of physical disabilities in people with relapsing forms of MS. This is a milestone in MS therapy.
The new medication, under the brand name Gilenya (pronounced Jil-EN-ee-ah), will be available as a “first line” treatment, meaning there are no recommendations for people to try other MS therapies before trying Gilenya. Novartis, the manufacturer, says the drug will be available for prescription in coming weeks.
Gilenya is a new approach to controlling MS. It blocks receptors on some of the same T and B immune cells that have been implicated in causing MS damage. The drug causes some of these cells to remain in lymph nodes, inhibiting them from migrating into the brain or spinal cord.
A second oral MS med is under review
Last July, the FDA agreed to give “priority review” status to EMD Serono’s cladribine tablets with the hope of an approval decision this December. Cladribine is a chemotherapy drug that is used to kill T and B cells in the immune system and thus slow down the attack on myelin.
The arrival of therapies that do not require regular injections greatly increases options – especially for people who are not doing well on their current drug or who have deep aversion to needles.
An informed choice
While oral drugs have long been a goal for researchers, the choice will not be quite as simple as putting down a needle and popping a pill. Gilenya is a powerful drug with potential side effects and risks as well as possibilities. The label carries warnings about these, including decreased heart rate after the first dose. The drug also increases risks of certain infections. In the clinical trials, two deaths from herpes infections occurred in people who took Gilenya at a higher dose than the level that has been approved. A number of pretreatment tests will be required and people will be monitored for potential lowered heart rate for six hours following their first dose. On the up side, clinical trial data suggest that Gilenya has a stronger impact on reducing relapse rates than a standard drug, Avonex, and also delays accumulation of physical disability.
For more details, including Frequently Asked Questions, and references to the clinical trials, please visit nationalMSsociety.org or call us for a printed copy of the September 22 News Bulletin.