FightSMA Names New Executive Director; Relocates Headquarters to Nation’s Capital

FightSMA Names New Executive Director; Relocates Headquarters to Nation’s Capital

(WASHINGTON, DC) – FightSMA, an international nonprofit organization created to strategically accelerate the search for a treatment and cure for spinal muscular atrophy (SMA), has named Ron Imbach as its new Executive Director, effective Dec. 1, 2011.

Ron Imbach is replacing the current CEO and founder of FightSMA, Martha Slay, who guided the organization from its inception in 1991 until the present.  Under Martha’s leadership, FightSMA has grown from an initial crusade to bring higher levels of awareness and understanding of spinal muscular atrophy (SMA) to the public to a leading advocate and research-centered organization focusing on the treatment and cure of the disease and support for the families of children with SMA.

“For the past 20 years, Martha Slay has led FightSMA with great passion, intelligence, and dedication; the SMA community owes her a great deal of gratitude for her accomplishments,” said FightSMA Chair Mike Calise.   “She has been a great inspiration to us all personally and professionally.”

Martha and her husband, Joe Slay, will continue to be actively involved as Board members for FightSMA.

Ron Imbach has worked in non-profit organizations in fundraising and leadership roles for the past twelve years, including:  the Campaign for Tobacco-Free Kids, Volunteers of America, and the Wesley Theological Seminary.  Through Ron’s leadership, expertise, and diligence, the charities he has served have benefitted greatly with major, planned, and corporate gifts totaling well over $100 million.  He is also an accomplished speaker and trainer, speaking to audiences of 5000 or more and training hundreds of staff and other groups.  According to Dan Hayden, Board member and head of the transition committee,

“Ron’s experience and track record of results have helped Ron become a visionary leader as well as a strong manager and motivator. “

Prior to working with charities, Ron was a financial advisor with a major brokerage firm, focusing on retirement and estate planning while raising and managing several million dollars in assets.  He was also a business development executive and worked in management positions in accounting and consulting in the private sector.  He has also owned and operated his own business.  Chairman of the Board, Michael Calise continued,

“We are also extremely excited to have Ron Imbach joining FightSMA as Executive Director. His vast experience in the nonprofit and business sectors will benefit FightSMA greatly and make him a great leader of our organization.  Ron is very passionate about FightSMA and will challenge each of us to have our legacy be finding a treatment or cure for SMA.” 

Ron was very active and excelled academically while completing his MBA at George Washington University with a concentration in marketing and public policy and his undergraduate studies at Shepherd University, majoring in accounting and economics.

FightSMA is also in the process of moving its national headquarters from Richmond, Virginia to the Washington, DC Metropolitan area in early 2012.  Founded in 1991, FightSMA (also known as “Andrew’s Buddies”) has awarded research grants at more than 40 universities and research institutions in the United States, Canada, the United Kingdom, France, and Italy.  For more information, please visit:  www.fightsma.org.

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Spinal Muscular Atrophy Experts Answering Questions Online on May 5, 2011

Spinal Muscular Atrophy Experts Answering Questions Online on May 5, 2011

Specialists will speak on respiratory issues, nutrition, orthopedics, clinical trial and neurology during FightSMA Annual Conference in Washington, D.C.

(Washington, DC) – The 2011 FightSMA Annual Conference, the Good Fight, is underway at the L’Enfant Plaza Hotel this week, and spinal muscular atrophy experts are gearing up to participate in a one-of-a-kind webcast. Participating in the Thriving with SMA: LIVE! webcast on Thursday, May 5, 2011 will be researchers and scientists in the fields of pulmonology, nutrition, orthopedics, clinical trial and neurology.

This unique web-based program is free to the public and will feature panel discussions by leaders in the SMA community.  Online attendees and those attending in person will be able to ask questions  of panelists representing each specific discipline, an opportunity that is unparalleled and offers exclusive access to some of the most respected professionals in the field.

The live webcast will begin at 9:00 AM EDT at www.fightsma.org, and will conclude at 2:00 PM EDT.

Those residing in the Northern Virginia, DC, and Maryland areas who are interested in the Thriving with SMA: LIVE! panel are encouraged to attend in person at the L’Enfant Plaza Hotel (480 L’Enfant Plaza SW, Washington, DC 20024)

Thriving with SMA Schedule (all times are EDT)

• 9:00 AM – Webinar I: Pulmonary/Respiratory: Dr. Mary Schroth (University of Wisconsin), Dr. Richard Kravitz (Duke University), Dr. Nanci Yuan (Stanford University),
• 10:15 – Webinar II: Orthopedic: Dr. John Smith (University of Utah), Dr. Craig Eberson (University Orthopedics Rhode Island), Dr. Brian Snyder (Harvard University), Dr. John Grayhack (Children’s Memorial)
• 11:30 – Webinar III: Nutrition: Rebecca Hurst (University of Utah), Erin Seffrood (University of Wisconsin), Barbara Godshall (Cincinnati Children’s Hospital Medical Center), Dr. Tom Crawford (Johns Hopkins University)
• 12:45 – Webinar IV: Clinical Trial / Neurology: Dr. Kathryn Swoboda (University of Utah), Dr. Sandy Reyna (University of Utah), Dr. Carolina Tesi-Rocha (Children’s National), Dr. Bob Leshner (Rady Children’s Hospital and The University of California San Diego), Dr. Ching Wang (Stanford University), Dr. Alex MacKenzie (Children’s Hospital of Eastern Ontario)

About FightSMA

FightSMA was created to strategically accelerate the search for a treatment and cure for spinal muscular atrophy (SMA), the number-one inherited cause of infant death. Celebrating its 20th year, the organization pursues this objective by raising awareness and funding for SMA research.  For more information on the organization and on spinal muscular atrophy, please visit http://www.fightsma.org.

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FightSMA Marks 20th Birthday with New Home on the Web

FightSMA Marks 20th Birthday with New Home on the Web

(Richmond, Virginia) – Parents fighting spinal muscular atrophy (SMA), the leading genetic killer of children under two, need help and information. Recognizing that need, FightSMA, an international nonprofit organization dedicated to finding a cure for SMA, is announcing the launch of its all new website, http://www.fightsma.org.

“When we set out to redesign FightSMA.org, we looked at the enormous amount of information we have for SMA parents, and hoped to make it more accessible and easy to find,” said FightSMA co-founder and president, Martha Slay. “The new website features better categorization and a more flexible design that will help us in our fight, and a new website is a great way to celebrate our birthday!”

The previous version of FightSMA.org was built in 2006. Many of the features from the old site carry over, including the Spinal Muscular Atrophy Blog, one of the top SMA blogs on the web. Another of the site’s most useful features, the Spinal Muscular Atrophy Guidebook, has been re-organized and moved to the new site.

The new site is built using the latest website management software and features a modular design. This design will allow FightSMA the flexibility to quickly and easily add content blocks to the front page and elsewhere as new information becomes available. The new FightSMA also features a mobile version, which will be seen by anyone accessing the site from a mobile phone or tablet.

The new FightSMA.org was designed and built by EndGame Public Relations, LLC. The work was funded by a grant from the Richard and Caroline T. Gwathmey Memorial Trust.

About FightSMA

Headquartered in Richmond, VA, 20-year-old FightSMA (also known as “Andrew’s Buddies”) is an international nonprofit group dedicated to accelerating research for a treatment or a cure for spinal muscular atrophy (SMA), a neuromuscular disorder that kills more babies than any other genetic disease. For more information on spinal muscular atrophy and FightSMA, please visit www.fightsma.org. You can also connect with FightSMA on Facebook and Twitter.

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2009 Fight SMA Conference a Success

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.

Spinal Muscular Atrophy Nonprofit FightSMA Offers Free Conference Webcast

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.

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.

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