ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, June 10, 2009

MDA Publishes First Advocacy Newsletter

Below is the text... it looks a lot better in it's html email form...


MDA Champions:
Meet Angela Wrigglesworth
Angela Wrigglesworth
Angela Wrigglesworth of Houston is a member of MDA's National Task Force on Public Awareness, and is a third grade teacher. Named Ms. Wheelchair Texas in 2004, she also currently serves as the Executive Director of the Ms. Wheelchair Texas Foundation. She was diagnosed with spinal muscular atrophy as an infant.
Read the full article
Senator Johnny Isakson (R-GA)
Johnny Isakson represents Georgia in the U.S. Senate.
Senator Isakson has twice played a pivotal role in introducing and supporting legislation that is important to the MDA community.
In the previous Congress, he and Senator Amy Klobuchar (D-MN) co-sponsored the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD-CARE) Amendments of 2008. Recently, he teamed with Senator Debbie Stabenow (D-MI) to co-sponsor the SMA Treatment Acceleration Act of 2009 which was introduced on May 26.
Read the full article
“How did you spend your summer vacation?”Youth Leadership Forums Empower Young Advocates
When it comes to advocacy, “the key is motivation,” says Chad McCruden, a 36-year-old disability advocate with Friedreich's ataxia who lives in Baltimore.
When a child has a disability, the parents are the advocates. As that child matures, the advocate role shifts, and people like McCruden work to ensure that these individuals become their own advocates through programs like the Youth Leadership Forum (YLF).
YLF was started as a committee in California during the Clinton administration. The focus was to create a “training camp” to teach high school-aged youth with disabilities about leadership and advocacy. The successful pilot program developed a curriculum and almost all 50states have since adopted the YLF program.
Read the full article

June - July 2009
Finding Our Voice
Welcome to the inaugural edition of the bimonthly newsletter of MDA's National Advocacy Office. In this issue you'll read about innovative programs that help young people learn to advocate for themselves and issues they care about, and meet others who have found success and fulfillment in letting their voices be heard. This issue also highlights how Georgia families who reached out to local elected officials now have an MDA champion in Congress – Senator Johnny Isakson – who is a key supporter of legislation that is vital to people affected by neuromuscular diseases. We welcome your comments and feedback at
advocacy@mdausa.org
Summer Program Gives Taste of College Life, Plus Crash Course on Self-Advocacy
Liam Cornwall is still more than a year away from attending college, but thanks to an innovative summer program, he already knows what it will be like to live, study and attend class at Virginia Tech University in Blacksburg, Va.
Read the full article
Notebook
SMA Act Introduced in Congress New Advocacy Tools on MDA's Web SiteMyMDA: The New Place to Be OnlineALS Awareness in July
Take 5!
Watch your “in” box and the July edition of Quest for details on the MDA Fly Out happening this summer!
Voice Box
“I am in awe of how many amazingly wonderful people make up our MDA family.”
-Frank Lombardi, a Virginia resident who hasCharcot-Marie-Tooth

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