Spinal Muscular Atrophy (SMA) Blog by FightSMA

The GSF Awards First 11 iPad Grants

Posted: February 4th, 2012 | By: Staff | No Comments

Saturday, February 4th, 2012

As we mentioned in a previous blog post, The Gwendolyn Strong Foundation (GSF) is awarding grants of 50 iPads in 50 weeks to SMA families as part of its Project Mariposa. The first eleven grants have now been awarded to eleven families! To learn more about the fortunate recipients, head over to the post about it on the GSF Blog!

Comments (0)

Categories : Spinal Muscular Atrophy Families and Friends

GSF Giving Away 50 iPads in 50 Weeks

Posted: January 26th, 2012 | By: Staff | No Comments

Thursday, January 26th, 2012

We’re very excited to announce that the Gwendolyn Strong Foundation (GSF), a partner of FightSMA that is led by FightSMA board member Bill Strong, is starting a very exciting project to grant 50 iPads in 50 days! The effort is called Project Mariposa. Here’s some information from the GSF website:

Project Mariposa will initially focus on granting iPads to those impacted by Spinal Muscular Atrophy (SMA) — 50 iPads in 50 weeks. These incredible devices, coupled with the growing application library that accompanies them, are literally life-changing in assisting with communication, education, and independence. The iPad is opening up new avenues that were previously impossible. It’s large screen size, light weight, portability, and featherlight touch screen make access to education, entertainment, and independence possible and in some cases it is allowing children to communicate for the first time in their lives. Project Mariposa’s goal is to provide that life-changing positivity for a large number of people.

Applications are now being accepted. The first grant recipient will be announced on Friday, February 3, 2012. One grant recipient will be announced each week via theGSF Facebook Fan Page. To submit your application, click here!

Comments (0)

Categories : Not on home page

Meet New FightSMA Executive Director Ron Imbach

Posted: January 24th, 2012 | By: Staff | No Comments

Tuesday, January 24th, 2012

By Ron Imbach, FightSMA Executive Director

I am overjoyed and honored to have been selected as the new executive director for FightSMA. This is a great cause, and I feel we can make significant progress toward an effective treatment and cure for SMA. I feel tremendous gratitude and appreciation for the work of our Board during the selection process and now during our transition. Martha and Joe Slay have been tremendously helpful. Dan Hayden and I have regular transition discussions, and I have been getting to know our entire Board. We have a very talented group, and I appreciate all of their ideas and encouragement to me.

Ron Imbach and son

So, as a supporter, a family with a child with SMA, a volunteer, etc., you are probably asking, “well who is Ron Imbach and how will he help our cause and lead our organization?” A little bit of my professional background and results are in the press release that is posted on the web site. To summarize, I have been an executive and leader for non-profit and for-profit organizations for over 20 years. I have raised a lot of money for worthy causes at three charities over the past 12 years. My experience includes positions with small organizations, similar to FightSMA, medium-sized companies, and very large national and multinational organizations. My leadership, motivational skills, coaching, and training have enabled the teams that I have managed to thrive. I will bring that same leadership to FightSMA. Finally, my background is very broad. My undergraduate degree is more technical with double majors in accounting and economics, and my early career included significant positions in public accounting and for a political campaign. I transitioned to business development and sales several years ago and completed my MBA with a concentration in marketing and public policy at George Washington University. I have even owned and operated my own business, so I am very comfortable being the visionary leader, but I have the skills to understand the day-to-day operations and financial issues facing FightSMA as well. This broad background will be a great asset for the organization.

Now, you may ask, “who are you really? We can learn most of this information from your resume.” I grew up in Martinsburg, West Virginia, about 75 miles from the Washington, DC area. It’s a small town, but I experienced many new places during my childhood travelling with my parents, and I was often part of the “voluntary greeting committee for new kids coming to my school.” I just love getting to know new people and hear their stories. That apparently has not changed. I still love that part of the work that I do now. I was very active in school, a very good student, active in sports, and various other activities. Little did I know that my initial charitable volunteering for “hunger walks” in my early teens would be a prelude for the focus of my life’s work. I attended college near my home and really enjoyed college. I was very active in a business fraternity and took leadership roles with clubs and other groups. I even worked as an accountant for a few years while in school. Of course, this was also a great opportunity for an extrovert like me to get to know a whole new group of interesting people.

Comments (0)

Categories : FightSMA Articles, Not on home page, Spinal Muscular Atrophy Families and Friends

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

Posted: January 18th, 2012 | By: Staff | No Comments

Wednesday, January 18th, 2012

Note: FightSMA published the following news release today, January 18, 2012

(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 succeeds 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.

For more information about Spinal Muscular Atrophy, visit FightSMA’s SMA Guidebook.

Founded in 1991, FightSMA (also known as “Andrew’s Buddies”) has awarded spinal muscular atrophy 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: http://www.fightsma.org.

Comments (0)

Categories : FightSMA News, Not on home page

Isis Initiates Phase 1 SMA Clinical Study

Posted: December 19th, 2011 | By: Staff | No Comments

Monday, December 19th, 2011

ISIS INITIATES PHASE 1 CLINICAL STUDY OF ISIS-SMN_RX IN PATIENTS WITH SPINAL MUSCULAR ATROPHY

CARLSBAD, Calif., December 19, 2011 – Isis Pharmaceuticals, Inc. (NASDAQ: ISIS) announced today that it has initiated a Phase 1 study of ISIS-SMNRx in patients with spinal muscular atrophy (SMA). SMA is a severe motor-neuron disease that is the leading genetic cause of infant mortality. Isis is developing ISIS-SMNRx as a potential treatment for all Types of SMA.

“SMA is a devastating disease that leads to the loss of motor neurons resulting in muscle weakness and respiratory failure in children. The genetic cause of this disease is well understood, but there are currently no effective disease-modifying therapies. Currently, treatment of SMA is entirely symptomatic and focuses on preserving muscle strength and lung function by physical therapy and assisted ventilation. This supportive approach has improved the natural history of SMA by extending life expectancy, but muscle weakness and atrophy are not affected. A disease-modifying drug like ISIS-SMNRx that specifically targets the cause of the disease could, for the first time, restore muscle strength and respiratory function and dramatically improve the children’s function and quality of life,” said Darryl C. De Vivo, M.D, Sidney Carter Professor of Neurology and Pediatrics and Co-Director of the Motor Neuron Center at Columbia University Medical Center.

SMA is a severe genetic disease that affects approximately 30,000 – 35,000 patients in the United States, Europe and Japan. One in 50 people, approximately 6 million people in the United States, are carriers of the SMA gene. Carriers experience no symptoms and do not develop the disease, however, when both parents are carriers, there is a one in four chance that their child will have SMA. SMA is caused by a loss of, or defect in, the survival motor neuron 1 (SMN1) gene leading to a decrease in the protein, survival motor neuron (SMN). SMN is critical to the health and survival of nerve cells in the spinal cord that are responsible for neuro-muscular growth and function. The severity of SMA correlates with the amount of SMN protein. Infants with Type 1 SMA, the most severe life-threatening form, produce very little SMN protein and have shortened life expectancy. Children with Type II and Type III have greater amounts of SMN protein and less severe, but still life-altering forms of SMA. ISIS-SMNRx is designed to treat all types of childhood SMA by altering the splicing of a closely related gene (SMN2) that leads to the increased production of fully functional SMN protein.

Comments (0)

Categories : FightSMA News, Spinal Muscular Atrophy News Stories, Spinal Muscular Atrophy Science and Research