Fight SMA’s Fighter Mom Program was recently profiled in Exceptional Parent Magazine.  Fighter Mom provides support, advice and information for parents fighting to bring an end a disease or condition.  It was founded by Joe and Martha Slay, as they saw more and more parents trying to form nonprofits or raise money for research or awareness.  Here’s an excerpt from the article:

How can FighterMom assist parents of a child with SMA? The FighterMom program grew out of a decision by moms fighting one particular disease to share what they’d learned with any mom fighting any kind of health-related foe that has attacked their child. They believe that the “lessons and experiences—though taught in the battle against one disease—could have universal application. The specifics of one disease might be unique, but the trials, the emotional highs and lows, the dark days, and the victories could be those of any mom.”   Based on that belief, one of the best resources FighterMom has to offer is The FighterMom Manual. It was created as a “survival guide” of reference tools to assist mothers and others taking on the challenge of “doing something” when their daughter, son, grandchild, niece, or nephew has been diagnosed with SMA or any other life-threatening chronic disease. Information is provided that will help readers determine the resources they will need to take on the role of a fighter mom.

Read the entire article on the Exceptional Parents website.  Simple registration is required.

From the University of Massachusetts Medical School E.K Shriver Center:

Help Researchers Learn About Your Emergency Preparedness Needs

Natural and man-made disasters or emergencies like severe storms, forest fires, chemical spills, floods and pandemic flu can seriously impact many people at once, including families challenged by disabilities or special health care needs.  Please help researchers understand your family’s needs related to disasters and emergencies by completing an online survey.

Researchers at the University of Massachusetts Medical School E.K Shriver Center want to learn about the emergency preparedness needs of parents of children with disabilities or special health care needs ages birth to 21.

The Shriver Center has been a pioneer in research, education and service for people with disabilities and their families for over three decades.  Your responses to this survey will assist us to develop projects and programs to meet your needs.

The brief online survey will take only a few minutes of your time. You can access the survey by going to http://www.surveymonkey.com/s.aspx?sm=fQVHbDPlA_2bfwBNT9eH8xDQ_3d_3d or pasting http://www.surveymonkey.com/s.aspx?sm=fQVHbDPlA_2bfwBNT9eH8xDQ_3d_3d
into your Internet browser window. Your responses to the survey will be completely anonymous, but essential since they will make an important contribution to the research.

For more information or questions about the survey, or to be placed on a mailing list to receive the survey results, please contact Sue Wolf-Fordham, Project Director, at susan.wolf-fordham@umassmed.edu.

Thank you for your help!

Sue Wolf-Fordham
E.K. Shriver Center
University of Massachusetts Medical School
200  Trapelo Rd.
Waltham, MA 02452-6319 USA
(tel)  781-642-0275
(fax) 781-642-0162

The Petition to Cure SMA, a list of signatures that will be delivered to the U.S. Congress to indicate support for the SMA Treatment Acceleration Act, reached a massive milestone.  Petition creator Bill Strong posted the following on Facebook today:

Today, nearly 7 months to the day after starting http://www.PetitionToCureSMA.com, we received our 50,000th petition signature in support of the SMA Treatment Acceleration Act!

Thank you John Kramer of Ohio — you are the 50,000th signature. And thank you to all 50,000 people across the world who have supported this effort. You have made a difference!

With your help recruiting new signers we can reach our new goal and get this legislation passed in the 111th Congress.

All the best,

Bill, Victoria, and Gwendolyn Strong
http://www.GwendolynStrong.com (Gwendolyn’s journey blog)

It’s not too late to add your name.  Click the banner below to join the effort!

 FB 19 [18:51m]: Play Now | Play in Popup | Download

This is part 2 of our 2009 State of the Disease Podcast for Spinal Muscular Atrophy, where we look back at the scientific advances in SMA research in 2008 and look forward to what might come in 2009.  This two-part series features the co-chairs of Fight SMA’s scientific committee, Alex MacKenzie, M.D. (Director of the Children’s Hospital of Eastern Ontario Research Institute) and Chris Lorson, Ph. D. (Assistant Professor at the University of Missouri-Columbia).

In part one Alex and Chris discussed three of the research advances they picked as being the most significant in 2008.  In this episode, they  finish that discussion by highlighting the following 2008 findings:

• Exercise promotes motor unit development and survival in mild SMA mice
• A variety of RNA-based therapeutics that are moving in vivo
• SMA Standards of Care
  

We also tackle the future … what might come in 2009 in spinal muscular atrophy research.

If you haven’t listened to part one of this two-parter, it’s strongly suggested you visit this post, and listen there first!

To listen to this episode, you can use the Flash mp3 player above, load the Fighting Back Podcast Feed into your favorite feed reader, subscribe via iTunes or other podcast directories, or simply use the download link above to load the file onto your computer.  If you have feedback, a comment or question, or are interested in having Fighting Back tell your story, please contact page! You can also leave a message in the form of a comment on this blog as well.

 FB 18 [14:02m]: Play Now | Play in Popup | Download

2008 was an important year in spinal muscular atrophy research, as scientists and doctors continued their work to find a treatment or cure for the neuromuscular disease.  This episode of Fighting Back Podcast is the first part of our yearly “look back and look forward”.  This time we look back at 2008 and look forward to 2009 with the co-chairs of Fight SMA’s scientific committee, Alex MacKenzie, M.D. (Director of the Children’s Hospital of Eastern Ontario Research Institute) and Chris Lorson, Ph. D. (Assistant Professor at the University of Missouri-Columbia).

Before the podcast recording session, Dr. MacKenzie and Dr. Lorson forwarded their lists of what they believe to be the most important scientific findings in SMA research in 2008.  In this episode, we have a spirited discussion of the first three items on the list, including what they are and why they’re important.  The advances discussed in this episode are:

• A non-SMN modifier of disease: Plastin-3 (B. Wirth)
• Muscle vs nerve SMN rescue in SMA mice (A. Burghes)
• Nutritional supplement w/ TSA significantly increases SMA mouse survival (C. Sumner)

(Note: We are efforting links for each of these. Please check back!)

In part 2 of our State of the Disease Podcast for SMA, which will be released next week, we discuss the remaining items on the list, including the role of exercise promoting motor unit survival and the groundbreaking SMA Standards of Care that were released in 2008.  Drs. Mackenzie and Lorson also discuss the important findings they they hope will happen in 2009.

To listen to this episode, you can use the Flash mp3 player above, load the Fighting Back Podcast Feed into your favorite feed reader, subscribe via iTunes or other podcast directories, or simply use the download link above to load the file onto your computer.  If you have feedback, a comment or question, or are interested in having Fighting Back tell your story, please contact page! You can also leave a message in the form of a comment on this blog as well.