Fight SMA Spinal Muscular Atrophy Conference 2010
2010 Researchers Conference
General Information
Dates: April 25-26, 2010
Location: L'Enfant Plaza Hotel, Washington, DC
Overview: Select researchers and scientists meet in an intimate setting to discuss the most recent research and clinical trials through presentations and open dialogue.
Tentative Schedule of Events
Sunday, April 25, 2010
| 5:00 PM | Welcome and Introduction by Dr. Chris Lorson |
| 5:30 PM | Presentations and Discussion |
| 7:00 PM | Dinner |
| 7:45 PM | Presentations and Discussion |
| 9:00 PM | Meeting close for the evening |
Monday, April 26, 2010
| 8:00 AM | Breakfast |
| 8:30 AM | Presentations and Discussion |
| 10:45 AM | Break |
| 11:00 AM | Presentations and Discussion |
| 12:30 PM | Lunch |
| 1:30 PM | Presentations and Discussion |
| 3:30 PM | Final Discussion and Closing Remarks by Dr. Chris Lorson |
Researchers Scheduled to be in Attendance
| Elliot Androphy, M.D. | University of Massachusetts Medical School |
| Arthur Burghes, Ph.D. | Ohio State University |
| Charles Cho, Ph.D. | Genomics Institute of the Novartis Research Foundation |
| Christine DiDonato, Ph.D. | Northwestern University |
| Kenneth Fischbeck, M.D. | National Institute of Neurological Disorders and Stroke |
| Amelie Gubitz, Ph.D. | National Institute of Neurological Disorders and Stroke |
| Jill Heemskerk, Ph.D. | National Institute of Neurological Disorders and Stroke |
| Rodney Howell, M.D. | National Institute of Child Health and Human Development |
| Brian Kaspar, Ph.D. | The Research Institute at Nationwide Children's Hospital |
| Rashmi Kothary, Ph.D. | Ottawa Health Research Institute |
| Adrian Krainer, Ph.D. | Cold Spring Harbor Laboratory |
| Christian Lorson, Ph.D. | University of Missouri-Columbia |
| Cathy Lutz, Ph.D. | The Jackson Laboratory |
| Alex MacKenzie, M.D., Ph.D. | Children's Hospital of Eastern Ontario Research Institute |
| D. Elizabeth McNeil, M.D. | FDA, Office of Orphan Products Development |
| George Mentis, Ph.D. | Columbia University Center for Motor Neuron Biology and Disease |
| Nikolai Naryshkin, Ph.D. | PTC Therapeutics |
| Sergey Paushkin, M.D., Ph.D. | SMA Foundation |
| Livio Pellizzoni, Ph.D. | Columbia University Center for Motor Neuron Biology and Disease |
| John Porter, Ph.D. | National Institute of Neurological Disorders and Stroke |
| Michael Sendtner, M.D. | University of Wurzburg |
| Charlotte Sumner, M.D. | Johns Hopkins University School of Medicine |
2010 Families and Friends Conference
General Information
Dates: April 26-27, 2010
Location: L'Enfant Plaza Hotel, Washington, DC
Hotel Room Cost: $100 per room, per night
Overview
Conference components include lay-friendly science briefing with Q&A, "Thriving with SMA" panel discussion, one-on-one consultations with panelists, and visits to Capitol Hill.
 Thriving with SMA Panel at the 2009 Annual Conference |
We hope that you marked your calendar and are as excited as we are about the 2010 FightSMA Annual Conference: The Good Fight. Families, friends, caregivers, and patients will be gathering at the L'Enfant Plaza Hotel in Washington, D.C., April 26-27, to discuss Spinal Muscular Atrophy (SMA) research, care, and clinical trials, and to advocate on Capitol Hill.
The conference will begin in the late afternoon of April 26th. FightSMA's Science Director, Dr. Chris Lorson will present an SMA overview and research update and take questions from the audience. During dinner, the "Thriving with SMA" panel will bring together SMA doctors and healthcare professionals to address issues of daily life for SMA patients and families, such as pulmonology, orthopedics, physical therapy, and nutrition. Following the panel presentation, families will have the opportunity to speak one-on-one with members of the panel to discuss concerns specific to their patient. After breakfast the next day, conference attendees will head to Capitol Hill to meet with Senators, Congressmen, and their representatives to advocate for support of SMA research.
 Stacy Saville and her son Jackson meet Sen. Warner during the 2009 Conference |
In 2009, FightSMA first broadcast the "Thriving with SMA" panel presentation over the internet. This was extremely popular, especially with families who were unable to travel to the conference due to the expense or illness. Families and caregivers representing 13 states and 4 countries logged in to participate in 2009. We plan to offer this remote access again this year and hope to reach even more families in more states and more countries, making critical information available to families and the professionals who follow SMA patients.
For the 2010 Families and Friends Conference, FightSMA has reserved a block of rooms at the L'Enfant Plaza Hotel for the nights of April 26th and 27th only*. These rooms are limited in number and are available on a first come, first serve basis. Due to rising costs, FightSMA must charge a non-refundable fee of $100 per room, per night, but FightSMA will subsidize the remaining cost of the room. A limited number of scholarships are available for families for whom this fee would be a hardship. (Please do not contact the hotel to try to reserve rooms within this block. FightSMA will handle reservations for the nights of April 26th and 27th.)
To request registration forms and information, or to learn how you can contribute to the scholarship fund, email Heather Lennon. Registration must be completed before March 1st.
We hope to see you in April!
* = Guests are encouraged to extend their stay and enjoy all that Washington, D.C. has to offer, but additional nights at the L'Enfant Plaza Hotel before or after the conference must be reserved separately and at the guests' own expense.
Corporate Sponsorship
If you or your company are interested in sponsorship opportunities during The Good Fight, please contact Heather Lennon.