2009 Fight SMA Conference a Success

Posted: April 30th, 2009 | By: Steve Mullen | Filed under: | No Comments

Another Big Year for Fight SMA’s Annual Spinal Muscular Atrophy Conference

(Richmond, VA) – The 2009 version of “The Good Fight”, Fight SMA’s Annual Spinal Muscular Atrophy Conference, wrapped up on Tuesday, April 28, and it was another successful year! Here are a few of the highlights:

20 researchers and two additional graduate students from the National Institute of Neurological Disorders and Stroke (NINDS) were in attendance.

Three of the attending scientists joined five additional doctors and healthcare professionals in an educational panel for attendees of the “Families and Friends Conference.” This year’s panelists were Thomas Crawford, M.D., Tina Duong, MPT, Craig P. Eberson, M.D., Sally Evans, M.D., Sarah Feasel, MEd, RD, LD, CNSC, Mary Schroth, M.D., Kathy Swoboda, M.D., and Alex MacKenzie, M.D., Ph.D.

On April 28, many of the families, friends and researchers descended on Capitol Hill to advocate for Spinal Muscular Atrophy and the SMA Treatment Acceleration Act, visiting the offices of more than 65 Congressional Representatives. After a productive day, the SMA community was thrilled to learn that HR 2149, the SMA Treatment Acceleration Act, had been re-introduced in the House of Representatives. FightSMA thanks all of our families, friends and researchers for kicking off the 2009 advocacy efforts in a big way.

For the first year, Fight SMA offered a webinar of the Families and Friends panels. The webinar was a success, with 30 participants from 13 U.S. states and a total of four countries. Those who utilized the webinar said the experience was great!

Fight SMA is thankful for the contributions of everyone who made this conference a success, and for its sponsors, who made it possible: PTC Therapeutics, Genzyme, Hill-Rom Company, ISIS Pharmaceuticals, Psychogenics, Permobil, The Medi-Kid Co., and Exceptional Parent Magazine. A special “thank you” goes to Hill-Rom Company and Genzyme, which not only sponsored the event, but also sent representatives to attend the Families and Friends Conference!

About Fight SMA
FightSMA is a 501c3 nonprofit corporation, organized in 1991 to strategically accelerate research for a treatment and a cure for spinal muscular atrophy (SMA), the leading genetic cause of infant death. For more information, please visit www.fightsma.org.

Tags: 2009, fightsma, News Releases

Spinal Muscular Atrophy Nonprofit FightSMA Offers Free Conference Webcast

Posted: April 16th, 2009 | By: Steve Mullen | Filed under: | Comments Off

Spinal Muscular Atrophy Nonprofit FightSMA Offers Free Conference Webcast

(Richmond, VA) – Traveling with a sick child is always difficult, even when the trip in question involves learning more about the child’s illness. That difficulty has only been amplified by the current state of the economy. For that reason, Fight SMA is providing a free live webcast of two seminars from this year’s Family and Friends Annual Spinal Muscular Atrophy Conference in Washington D.C.

Spinal Muscular Atrophy (SMA) is the leading genetic killer of children under two. Fight SMA is an international nonprofit organization dedicated to finding a treatment or cure for this killer.

The Families and Friends Conference, which is part of the annual families and researchers conference called “The Good Fight”, allows families the opportunity to meet and learn from prominent scientists who are researching SMA. It will be held at the L’Enfant Plaza Hotel on April 27 and 28, 2009. The webcast will allow those not attending the event to view the two seminars on April 27: the Basic Science Update (5:00 p.m. to 6:00 p.m. ET) and the Thriving with SMA Panel (6:30 p.m. to 8:15 p.m. ET).

A limited number of spaces are available for the webcast on a first come, first serve basis. If you would like to take advantage of this opportunity and sign up for one of the spaces, please email Heather Lennon by April 23rd.

For more information on the conference, please visit the Fight SMA website. To reserve your webcast reservation, please email Heather Lennon.

###

This release also available on these sites:
PRLog: Spinal Muscular Atrophy Nonprofit FightSMA Offers Free Webcast of Annual SMA Conference
PitchEngine: Spinal Muscular Atrophy Nonprofit FightSMA Offers Free Webcast of Annual SMA Conference
1888PressRelease: Spinal Muscular Atrophy Nonprofit FightSMA Offers Free Webcast of Annual SMA Conference
24-7 Press Release (coming soon)