3 posts tagged “ALS advocacy”

2018 National ALS Advocacy Conference: A recap from Team of Advisors members Rich & Paul

Posted 1 month ago by

Last month, Rich and Paul from this year’s Team of Advisors attended the 2018 National ALS Advocacy Conference in Washington D.C. to learn about the latest ALS research, network, and meet with members of congress on Capitol Hill. Just over 600 people attended the event, including 100+ pALS and 240 first-time participants.

The event started on Sunday with opening remarks followed by an afternoon session, reception, networking dinner and entertainment. Paul and Rich had the opportunity to share with pALS about PatientsLikeMe. Read on to learn how it went and what they accomplished.

(front row: Holly Crowder, Stacy Crowder, Kathy Tavano, Team of Advisors member Paul and Tanner Hockinsmith from the ALSA; back row: Stephen Reynolds from Senator Cronyn’s office)

Day 2: Research & Policy

  • Opportunities to participate in research: Rich (and other participants) gave saliva samples to the Centers for Disease Control (CDC) and blood to the National Institutes on Health (NIH).
  • Interview with Rich: Rich spoke about the ALS Registry Taskforce that exists to brainstorm and come together to find ways to increase participation.
  • Public Policy sessions: These sessions included time to prepare for the visit to Capitol Hill, a Congressional Panel with bipartisan Congressional staff and remarks from US Senator Bill Cassidy.
  • Interview with Pat Quinn: Pat Quinn, the Ice Bucket Challenge co-founder spoke about a new voice generating software and platform.
  • Research panel: Lucie Brujin, John Landers and Tody Ferguson held a panel discussion on where we are in ALS research, and what is coming in the pipeline.
  • Closing remarks/strategy: Following the closing remarks, attendees had time to strategize with state chapters. Paul and Rich’s chapter (the ALS Association FL Chapter) was represented by 17 people including:
  • 2 pALS, caregivers, family members, friends, the President of the ALS Association chapter in Florida and 3 researchers

 

(Tim Cummings (surviving spouse of ALS patient, former board president of ALS association FL chapter), Dorothy Marsh (who lost her sister to ALS), Martin Rivera (Rep. Darren Soto’s office), Team of Advisors member Rich, Talitha, and Rich’s daughter, Gigi.)

Day 3: To the Hill

Rich, Paul and the other members of their chapter headed to Capitol Hill to meet with senators, representatives and their staff.

Their mission?

The Taskforce of advocates asked U.S. Senators and Representatives to gain support for:

  1. The senate and house bills dealing with the ALS Disability Assurance Act. Passage of this bill would eliminate the 5-month waiting period for Medicare.
  2. Continued funding $10M for Department of Defense (DOD) ALS research
  3. CDC funding $10M for the National ALS Registry
  4. Continued NIH funding for $39.3B
  5. Support for Steve Gleason to receive the Medal of Freedom award

They met with congressmen and their staff including:

  • The offices of Senators Marco Rubio and Bill Nelson and Representatives Darren Soto, Al Lawson, John Rutherford and Ted Yoho.

Were they successful?

“There is no way to know for sure but based on questions asked by the people we met with and the notes taken we felt our mission was successful,” Paul said.

While getting support for “Right to Try” wasn’t officially part of the mission, they did discuss the topic with many of the staffers they met. Representatives Lawson, Rutherford and Yoho all voted in favor of the legislation a few weeks later.

Going forward, Rich and Paul plan to follow up with the congressmen (and their staff) to make sure their asks are met.

Want to get involved with ALS advocacy? On PatientsLikeMe, more than nearly 700 members of your community say they’re interested in advocacy — Join today to connect with others who want to make a difference.

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Worth a thousand words: A day in the life of Larry

Posted April 14th, 2017 by

As a child, Sarah Howell loved art. She got her first camera at 6 years old and realized, over time, that she had a way of connecting emotionally and expressing herself through photos. Now, she has her own studio. Her passion? Capturing genuine family moments. Sarah often stays overnight in the home of the family so she can spend the entire next day with them, from start to finish.

A day in the life of Larry Tyler

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

When Sarah’s friend, Teri, asked her to capture a day in the life of her father, Larry Tyler, she was both shocked and honored. Larry, living with ALS that required 24-hour care, wanted the photos released to raise awareness and funding for ALS.

Sarah was there with her camera, from Larry’s wake-up at 10:30am, until he went to bed that evening. What emerged was a series of 24 deeply moving photos that capture a day in the life of Larry and his family.

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

While she was prepared for sad moments with the family, she wasn’t prepared for the level of caregiver exhaustion she witnessed. For Sarah, the realization that ALS is a family disease was the hardest part of her visit.

 

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

Despite the hard moments of exhaustion, chaos and frustration, Sarah also witnessed how Larry and his family coped: with laughter and humor.

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

Reflections

After this time with Larry and his family, Sarah now wants to photograph a day in the life of one person living with ALS every year. Even though she doesn’t have a personal connection to ALS, she feels that this story could resonate with other caregivers. She shared her collection at a gallery and was moved by the reception.

Sarah hopes the collection will not only raise awareness for ALS, but also to increase awareness of the need for caregiver support and therapy. In the meantime, she hopes that her photos can do some good.

Check out the rest of Sarah’s 24 photo collection with Larry.

Find other ALS caregivers

Do any of Sarah’s photos resonate with you? Share in the comments.

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