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Alabama Advocates in Action: Highlights from the 2018 ALS Advocacy Conference

Advocacy plays an integral role in our mission as we fight for people with ALS in Washington, DC and in our state capitols.  In May of 2018, advocates from across the nation convened in Washington D.C. for the 2018 National ALS Advocacy Conference. The group included children and adults living with ALS and family members, as well as researchers, physicians and health care providers.

The Alabama Chapter’s Advocacy delegation was led by ALS Alabama Chapter co-founders, Stuart and Marcia Obermann. Also included in the Alabama delegation were Bryan and Debby Stone (Huntsville, AL), Rose and Glen Hatcher (Birmingham, AL), and ALS Board President, Dr. Jim McCarty. After a day and a half of meetings and training sessions ALS Advocates from across the country went to Capitol Hill for conversations with their legislators.

The Alabama Delegation met with staffers from the offices of: Senator Richard Shelby, Senator Doug Jones, Representative Martha Roby, Representative Mike Rogers, Representative Mo Brooks, Representative Robert Aderholt, Representative Terri Sewell, Representative Bradley Byrne and Representative Gary Palmer.  They called on them to increase federal funding to support and drive ALS research and treatment programs and improve access to health care benefits by passing the ALS Disability Insurance Access Act (S.379/H.R.1171).  As a result of their efforts, Senator Doug Jones will co-sponsor S. 379 - legislation waiving the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance. 

The four-day event also featured key advocacy training, where attendees received critical insight into our legislative priorities, tips for making their congressional meetings most effective and continuing advocacy efforts after returning home. Thank you to the ALS Alabama delegation for helping to transform the lives of all people affected by ALS.

If you would like to become an ALS Advocate and help us continue to raise our voice and drive critical legislation for ALS patients and families, please contact Stephanie Willis, Executive Director at stephanie@alsalabama.org or 1-800-664-1242.

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A Certified Treatment Center of Excellence Spotlight: Crestwood ALS Care Clinic

Crestwood CTCoE

The ALS Association's national network of 62 Certified Treatment Centers of Excellence (CTCEs) provides ALS care and services in a supportive atmosphere, emphasizing hope and quality of life.

CTCEs are multidisciplinary centers that bring together a team of health care processional specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit.

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Caregiver Appreciation Event 

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November is National Family Caregiver Month and the ALS Association Alabama Chapter is partnering with Alabama Respite and the Birmingham Area Sharing the Care Group to host a Caregiver Appreciation Event on Thursday, November 15 from 10:00 am to 1:00 pm at Brookwood Baptist Church in Birmingham. 

We love our family caregivers and want to celebrate them and acknowledge their important role and impact on the quality of life for people living with ALS.  The event on November 15 will include tons of fun activities for Caregivers to enjoy – including a painting class, yoga demonstration, and more.  Be sure to follow us on social media to find out more details as the event approaches.

North Alabama Caregivers – Alabama Respite and its partners are also hosting an event in Huntsville on Friday, November 2 from 10am to 1pm at Brookdale Jones Farm.  All Family Caregivers are welcome to attend.  Event information will be on our website and social media. 

For more information contact Melissa Enfinger at melissa@alsalabama.org or 1.800.664.1242.