2010 June | Spinal Muscular Atrophy

Archive for June 2010 – Page 2

4th Annual FightSMA Rubber Duck Race

Posted: June 7th, 2010 | By: Staff | No Comments

Monday, June 7th, 2010

Thank you to everyone who came out for 4th Annual Rubber Duck Race, organized by Patrick’s Buddies/FightSMA New Jersey, Sunday, May 23, 2010 in Westfield, New Jersey’s Mindowaskin Park. The crowds turned out for an awesome race and helped raise funds to support the search for a treatment and cure for Spinal Muscular Atrophy (SMA), a deadly crippler and the number-one inherited genetic cause of infant death.

Special thanks to the members of the Rutgers Scarlet Knights football team who showed their support for the fight against SMA and to the volunteers who made the event possible.

Patrick with Eric LaGrande and Mohammed Sanu from Rutgers Scarlet Knights

Pictured above: Patrick with Eric LaGrande and Mohammed Sanu
from the Rutgers Scarlet Knights

Check out more pictures and video from the Duck Race on the Westerfield Patch’s website.

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Categories : FightSMA News, Spinal Muscular Atrophy Events, Spinal Muscular Atrophy Families and Friends

An office-wide show of support

Posted: June 3rd, 2010 | By: Staff | No Comments

Thursday, June 3rd, 2010

In February of 2009, Jonay Hipkins lost her 14 month old daughter Jordyn to type 1 spinal muscular atrophy (SMA), the most severe form of the neurodegenerative disease that kills more babies than any other genetic disease.

Mclaren Family Care staff wears their FightSMA t-shirts. Last month, Jonay’s co-workers helped her honor Jordyn and all the other victims of the disease with a simple fundraiser. The entire staff of Mclaren Family Care in Grand Blanc, Michigan purchased FightSMA t-shirts and then made a donation of at least $5.00 to wear the shirt and jeans to work. In addition to raising $250 for SMA research, the staff also raised awareness of the disease. Thank you to the staff of Mclaren Family Care for joining the fight to end SMA!

Plans are already in the work to repeat the event later in the summer.

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Categories : Spinal Muscular Atrophy Families and Friends

SMA Treatment Acceleration Act Summer Challenge: 150 Cosponsors

Posted: June 2nd, 2010 | By: Staff | No Comments

Wednesday, June 2nd, 2010

Dear Families and Friends,

School’s out and summer is officially here – time for rest, relaxation and fun in the sun!

But, we still have a lot of work to do for the SMA Treatment Acceleration Act!

After securing 100 cosponsors in the House, well-surpassing our final total from the 110th Congress of 85 cosponsors, it’s time to ramp up grassroots efforts and work towards our new goal: 150 cosponsors!

Be sure to check THOMAS periodically to see if your Members of Congress have signed on as cosponsors. Once they have, be sure to send them a message thanking them for their support!

If your Members have not signed on, here are some ways to make a difference:

Visit www.PetitionToCureSMA.com and sign your name. Forward the site to friends, family and coworkers, and encourage them to sign in support, too!
Reach out to your Members of Congress via email, fax, phone and let them know you’d like them to support the SMA Treatment Acceleration Act.
Schedule a meeting in your Members’ district offices during the summer recesses (you can find the 2010 Calendar HERE).

If you need any guidance or help, FightSMA is here as a resource for you. Please do not hesitate to contact Caroline Gibson, Public Affairs Coordinator, at 804-515-0080 or carolinegibson@fightsma.com.

Thank you for all you are doing to help fight SMA!

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Categories : SMA Treatment Acceleration Act

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