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WELCOME TO THE ALS ASSOCIATION
MINNESOTA CHAPTER! | |
We Are A Local Organization With National Support!
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| Former MN Twins baseball player, Kent Hrbek and his wife, Jeanie. |
The ALS Association is the only not-for-profit voluntary health organization dedicated solely to the fight against ALS.
The Minnesota Chapter was incorporated in 1993 when patients, families and related professionals banded together to share in their struggle with this tragic disease and to provide patient services, commnity education and support of national research. Kent Hrbek, former Minnesota Twins baseball player, and his wife, Jeanie are two of the Minnesota Chapter founders and continue to loyally support us.
Our website offers a lot of information. We welcome you to browse through the many topics, but we never want to forget our main focus - people dealing with the stages of ALS. If you are a person with ALS (PALS) or a caregiver, family member of friend of a person with ALS please go to Patient Services/Local Services to find out how The Minnesota Chapter can help. Please don't hesitate to contact us at any time.
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The ALS Association to
Support Trial of Lithium
The ALS Association is funding a major clinical trial to determine if lithium can slow disease progression in patients in the early stages of ALS. The study builds on earlier promising results from preclinical research and a small, open-label investigation in ALS patients.
“Lithium has generated a lot of interest in the ALS community,” according to Lucie Bruijn, Ph.D., Senior Vice President, Research and Development of The ALS Association. “This trial is vital for testing the efficacy of lithium in a well-controlled way. It’s the crucial next step for investigating the potential of this drug.”
The trial is being supported through The Association’s TREAT ALS (Translational Research Advancing Therapies for ALS) initiative, and will use the TREAT ALS/NEALS Clinical Trials Network. Lead investigators for the study will be Merit Cudkowicz, M.D., and Swati Aggarwal, M.D., of Massachusetts General Hospital, Lorne Zinman, M.D., from the University of Toronto, Petra Kaufman, M.D., from Columbia University, and Jeremy Shefner, M.D., of SUNY Upstate Medical University.
 Read full story
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MINNESOTA CHAPTER SPOTLIGHT! | |
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ALS AWARENESS MONTH
IS A TIME FOR
2008 NATIONAL ALS ADVOCACY DAY AND PUBLIC POLICY CONFERENCE
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2007 Delegates in Washington, DC with Senetor Coleman |
The 2008 National ALS Advocacy Day and Public Policy Conference, which will take place in Washington, DC May 11-13, 2008. Please visit our Advocacy Day webpage for detailed schedule of events for this year’s conference and a recap of 2007 ALS Advocacy Day and Public Policy Conference.
The impact that Advocacy Day has had is evident. Advocates have more than just raised awareness of the disease in the halls of Congress. They have fought for and passed significant legislation that not only benefits the lives of PALS and families today, but also those whose fight has not yet begun.
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The ALS Association has: more than quadrupled annual federal funding for ALS research from $15 million to more than $60 million in 2007 alone -
Enacted legislation to waive the 24-month Medicare waiting period for people disabled with ALS the only time Congress has waived the waiting period since it was first implemented -
Established a presumptive disability ruling to ensure PALS have timely access to Social Security benefits.
Since Advocacy Day 2007 we have:
- Passed the ALS Registry Act in the House of Representatives by a 411-3 vote and secured the support of more than two-thirds of the Senate as cosponsors.
- Partnered with the Department of Defense as it has provided $5 million to establish the peer reviewed ALS Research Program (ALSRP), which is focused on translational research.
- Worked with Congress to appropriate an additional $3 million to continue the ALS registry at the CDC, bringing total federal funding for the registry to $5 million.
These are just a few of the accomplishments that advocates have achieved as a result of Advocacy Day and their year-round outreach to Congress.
Though it's too late to physically join us in Washington, DC this year, please join us in spirit as we turn fear into hope and hope into action. Together, we can create a world without ALS.
If you have any questions about this year’s National ALS Advocacy Day and Public Policy Conference, please contact the Advocacy Department toll-free at 1-877-444-ALSA or advocacy@alsa-national.org.
Check out some other Minnesota Chapter awareness articles.
See our In The News page for article about March of Faces Bannor. See how you can help get us another bannor to display at events!
Read about Julie Kottsick and her family, our ALS Across America Family. Use the links on the ALS Awareness banner at the top of this page to read other's stories. | |
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2008 GALA - DINNER OF CHAMPIONS | |
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BLACK WOODS BLIZZARD TOUR | |
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KOLAR TOYOTA ALS WALLEYE TOURNAMENT |
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KENT HRBEK OUTDOORS/TWINS BASS FISHING CLASSIC | |
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