12 posts tagged “ALS community”

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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Circulation issues & ALS

Posted 2 months ago by

Do you have circulation issues like swelling (also called edema) or a burning (or cold) sensation in your legs and feet? How do you cope? From compression stockings to therapeutic massage and limiting salt intake, pALS are managing their circulation issues in some creative ways.

Why do some people with ALS experience poor circulation?

For many people living with ALS walking becomes difficult as their condition progresses. Lack of physical activity can make it difficult for the blood to reach the legs, feet, arms and hands, leading to poor circulation and swelling (some PatientsLikeMe members report swelling in their feet and hands). Swelling is also caused by dehydration, inflammation or consuming too much salt.

Some symptoms include:

  • Swelling or puffiness in legs, arms, hands or feet
  • Stretched and/or shiny skin
  • Skin that stays depressed after being pressed
How pALS manage:

If you’re experiencing any of the symptoms above, talk to your doctor. He or she may prescribe a diuretic (or water pills, to help rid your body of excess salt and water) but diuretics should be used with caution since many pALS are already dehydrated. Here are a few things some pALS are trying:

  • Electric blankets or hand warmers like the ones used for hunting
  • Ted Hose or compression socks (if you’re still walking) to prevent blood clots
  • Leg massage devices like this one or this one to get the blood flowing
  • Kathy Peters, Muscular Dystrophy Associations’s ALS Health Care Services Coordinator, warns that an ordinary reclining armchair can actually lead to more swelling. Instead, she recommends raising your feet (with a tilt-in-space wheelchair and hospital bed) so they’re on the same level or higher than your heart.
  • For more tips, check out this blog post about managing swollen feet.

How do you manage circulation issues? Any questions, thoughts or tips you’d like to share with the community? Join PatientsLikeMe and add your voice to the conversation.

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