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Archive for April 2010

Attention SMA Families and Friends Unable to Visit Capitol Hill on April 27th

Posted: April 29th, 2010 | By: Staff | No Comments
Thursday, April 29th, 2010

On Tuesday, April 27th, attendees of the 2010 FightSMA Annual Conference in Washington, DC visited over 70 Congressional offices on behalf of the SMA Treatment Acceleration Act. Families and friends shared information about spinal muscular atrophy (SMA) and the SMA Treatment Acceleration Act (HR 2149, S 1158) with their Congressmen and Senators and encouraged them to cosponsor this historic and paramount legislation.

If you and your family were unable to attend the FightSMA Annual Conference, but would like to advocate for the SMA Treatment Acceleration Act, THIS IS YOUR CHANCE!

Below is a list of Congressional offices that were visited on Tuesday, April 27th. If you recognize your Members’ name(s) on this list, please reach out to them! Thank them for meeting with representatives from your district or state, and reiterate just how important this legislation is to you. Be sure to check THOMAS (http://thomas.loc.gov) to see if your Member is a cosponsor of HR 2149/S 1158. If so, please thank them for cosponsoring, and ask them to reach out to their colleagues to encourage them to cosponsor as well.

If they are not yet a cosponsor, tell them just how important this legislation is to you and ask them to join the growing list of Members of Congress who are in favor of this legislation that will take SMA research over the finish line.

We have indicated whether it was a Member meeting, or fielded by members of the respective Member’s legislative team. If you have any questions, or would like further assistance in contacting your Members of Congress, please contact Caroline Gibson (carolinegibson@fightsma.com, 804-515-0080).

Here’s to seeing the SMA Treatment Acceleration Act cross the finish line!!

House Meetings
Frank Kratovil (MD)- Staff Meeting
John Sarbanes (MD)- Member and Staff Meeting
Kathy Castor (FL)- Member Meeting
Steve Israel (NY)- Staff Meeting
Mike McMahon (NY)- Member Meeting
Yvette Clarke (NY)- Member Meeting
Carolyn Maloney (NY)- Staff Meeting
Elliot Engel (NY)- Member and Staff Meeting
Frank Pallone (NJ)- Staff Meeting
Pat Tiberi (OH)- Member and Staff Meeting
Jim Jordon (OH)- Staff Meeting
Mary Jo Kilroy (OH)- Staff Meeting
Blaine Luetkemeyer (MO)- Member Meeting
Rob Wittman (VA)- Member Meeting
Frank Wolf (VA)- Member Meeting
Glenn Nye (VA)- Member and Staff Meeting
Eric Cantor (VA)- Staff Meeting
Michael Michaud (ME)- Member Meeting
Virginia Foxx (NC)- Member Meeting
Mel Watt (NC)- Staff Meeting
Jan Schakowsky (IL)- Staff Meeting
Daniel Lipinski (IL)- Staff Meeting
Patrick Kennedy (RI)- Member and Staff Meeting
Jim Langevin (RI)- Member and Staff Meeting
Gregg Harper (MS)- Member Meeting
Gene Taylor (MS)- Staff Meeting
Travis Childers (MS)- Staff Meeting
Martin Heinrich (NM)- Staff Meeting
John Shadegg (AZ)- Staff Meeting
Cliff Stearns (FL)- Staff Meeting
Jay Inslee (WA)- Staff Meeting

Senate Meetings
Ben Cardin (MD)- Staff Meeting
Tom Carper (DE)- Staff Meeting
Ted Kaufman (DE)- Staff Meeting
Bill Nelson (FL)- Staff Meeting
George LeMieux (FL)- Staff Meeting
Orrin Hatch (UT)- Staff Meeting
Chuck Schumer (NY)- Staff Meeting
Kirsten Gillibrand (NY)- Staff Meeting
Frank Lautenberg (NJ)- Staff Meeting
Robert Menendez (NJ)- Staff Meeting
George Voinovich (OH)- Staff Meeting
Sherrod Brown (OH)- Staff Meeting
Johnny Isakson (GA)- Staff Meeting
Kit Bond (MO)- Staff Meeting
Mark Warner (VA)- Staff and Member Coffee
Jim Webb (VA)- Staff Meeting
Olympia Snow (ME)- Staff Meeting
Richard Burr (NC)- Member Meeting
Kay Hagan (NC)- Member Meeting
Roland Burris (IL)- Staff Meeting
Richard Durbin (IL)- Staff Meeting
Sheldon Whitehouse (RI)- Member Meeting
Jack Reed (RI)- Member Meeting
Thad Cochran (MS)- Member Meeting
Tom Udall (NM)- Staff Meeting
Jeff Bingaman (NM)- Staff Meeting

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Categories : SMA Treatment Acceleration Act

FightSMA Canada, CML HealthCare and The Children’s Hospital of Eastern Ontario Foundation Unite to Provide $500,000 Research Grant

Posted: April 28th, 2010 | By: Staff | No Comments
Wednesday, April 28th, 2010

FightSMA Canada has been awarded a C$250,000 research grant from CML HealthCare of Mississauga. The Children’s Hospital of Eastern Ontario (CHEO) Foundation will match the grant, providing a total of C$500,000 to advance spinal muscular atrophy (SMA) research. The multi-year grant will support investigation into “clinic-ready agents” that can increase the presence of Survivor Motor Neuron, a protein that is essential for muscle strength and is deficient in children diagnosed with SMA.

“SMA is a devastating disease,” said CHEO research institute’s Dr. Alex MacKenzie. “It is the number-one genetic cause of death among infants.  This generous gift from CML HealthCare and the CHEO foundation will be key to moving the fight against SMA forward and will provide the thousands of children fighting this terrifying disease with hope for an effective treatment in the future,” said Dr. MacKenzie.

“CML HealthCare is excited about supporting the fight against SMA,” said Kent Nicholson, Executive Vice President and Chief Operating Officer. “We are very impressed and inspired by the determination and dedication of the researchers and families fighting SMA, and we are proud to be a part of the fight.”

“I want to express my appreciation for the support that CML HealthCare has provided and for their continued dedication in helping us find a cure for SMA,” said Tracy Lacey, President of FightSMA Canada. “CML’s efforts have made our recent research funding campaign one of the most successful that we have ever had.”

As a leading Canadian provider of diagnostic medical services, CML HealthCare is dedicated to providing patients with Care. Confidence. Comfort.™ The nearly 40-year-old company is one of largest providers of medical imaging services in North America and one of the largest community-based providers of laboratory testing services in Ontario.

“It is companies with vision, like CML HealthCare, that are truly changing our world,” said Martha Slay, President of FightSMA. “We all benefit from their generosity and from their example.”

FightSMA is an international nonprofit corporation dedicated to developing a treatment for spinal muscular atrophy (SMA). FightSMA has awarded SMA research grants to more than 40 universities and research institutions in Canada, the United States, the United Kingdom, France, and Italy.

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Categories : FightSMA News

CML HealthCare and FightSMA Canada Join Forces in the Fight Against Spinal Muscular Atrophy

Posted: April 28th, 2010 | By: Staff | No Comments
Wednesday, April 28th, 2010

CML HealthCare of Mississauga, Ontario has partnered with FightSMA Canada, to help find a cure for spinal muscular atrophy (SMA), the leading genetic cause of death among children under the age of two. The awareness of the devastating impacts of SMA is low among the general public. The new partnership will provide a greater voice in the efforts to raise funds and increase awareness of SMA in communities across Canada.

Spinal Muscular Atrophy (SMA) refers to a group of diseases, which affects the motor neurons of the spinal cord and brain stem. The disease does not discriminate on the basis of gender or ethnicity.

“CML HealthCare is proud to be a partner in the fight against SMA, “said Paul Bristow, President and Chief Executive Officer. “We take great pride in supporting research that gives those individuals with SMA a fighting chance.”

“FightSMA is excited to formalize our partnership with CML Healthcare in our efforts to find a cure. Working with CML over the past 2 years we have done great things together and we look forward to the future opportunities that this partnership provides to raise money and awareness for all of the individuals and families affected by SMA,” said Tracy Lacey, President of FightSMA Canada.”

As a leading Canadian provider of diagnostic medical services, CML HealthCare is dedicated to providing patients with Care. Confidence. Comfort.™ The nearly 40-year-old company is one of largest providers of medical imaging services in North America and one of the largest community-based providers of laboratory testing services in Ontario.

FightSMA is an international nonprofit corporation dedicated to developing a treatment for spinal muscular atrophy (SMA). FightSMA has awarded SMA research grants to more than 40 universities and research institutions in Canada, the United States, the United Kingdom, France, and Italy.

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Categories : FightSMA News

Update from the 2010 FightSMA Annual Conference

Posted: April 26th, 2010 | By: Staff | No Comments
Monday, April 26th, 2010

2010 FightSMA Annual Conference Logo

The 2010 FightSMA Annual Conference, entitled “The Good Fight,” opened in yesterday, April 25th, at the L’Enfant Plaza Hotel in Washington, D.C with an international collection of researchers gathering to discuss spinal muscular atrophy (SMA) and related sciences. FightSMA’s Science Director, Dr. Chris Lorson, started off the meeting with a brief introduction before attendees heard from Dr. Kathy Swoboda from the University of Utah, Dr. Rashmi Kothary from Ottawa Health Research Institute, Dr. Livio Pellizzoni from the Columbia University Center for Motor Neuron Biology and Disease, and Dr. Allison Ebert University of Wisconsin-Madison. After dinner, Dr. Charlotte Sumner of the Johns Hopkins University School of Medicine, Dr. Barrington Burnett of National Institute of Neurological Disorders and Stroke, and Dr. Michael Sendtner from the University of Wurzburg (Germany). Topics of the evening included SMA clinical trials, mouse models, and iPS cells.

The researchers’ portion of the conference resumes today with additional presentations and discussions wrapping up shortly before the families and friends portion opens at 5:00PM with an introduction by FightSMA’s president, Martha Slay, and a Science Update by Dr. Lorson. This and the “Thriving with SMA” panel will be available by webcast, free of charge, for families and caregivers unable to attend the conference in person.

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Categories : FightSMA News, Spinal Muscular Atrophy Science and Research

Fighting Back Podcast #23 – Hill-Rom

Posted: April 23rd, 2010 | By: Staff | No Comments
Friday, April 23rd, 2010

fighting-back-23-100428.mp3
In this episode of Fighting Back Podcast, we talk with Chad Boerst from Hill-Rom.  Hill-Rom is a sponsor of the 2010 FightSMA Annual Conference, in Washington D.C.  The company was also a sponsor of the 2009 conference.

Chad tells us about the products that Hill-Rom manufactures and sells that help SMA patients and families, and why Hill-Rom is such a big supporter of FightSMA.

To listen to our interview with Chad, can use the Flash mp3 player above.  You can also 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.

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Categories : Podcasts, Spinal Muscular Atrophy Events
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