12 posts tagged “patient advocate”

Meet our 2019 Team of Advisors!

Posted 3 months ago by

We’re excited to announce the nine members who have been selected to join the 2019 Team of Advisors! This group of active members will be collaborating with PatientsLikeMe in the next year to offer feedback on new research and product development, to advocate on behalf of patients, and provide real-world perspectives to us and our partners.

“It’s nice to connect with people who go through the same things that you do every day,” says on Team of Advisors member Marybeth, who’s living with multiple sclerosis and other chronic conditions.

Click here to watch a 2-minute video about this group!

Say hello to the team! Pictured above left to right:

(Back row/standing)

Marybeth (Blujnbby), living with multiple sclerosis, rheumatoid arthritis, myasthenia gravis

Steven (Stunninsteve), living with multiple sclerosis

Joseph (Jpo_runs), living with Parkinson’s disease

Ashley (Ashley876), living with major depressive disorder and PTSD

(Middle row/seated)

Juana (Juanymata), living with lupus, rheumatoid arthritis, Sjogren’s syndrome

Wes (Jwsexton7), living with ALS

Eva (Treat2c), living with fibromyalgia, migraine, lupus, rheumatoid arthritis, Sjogren’s syndrome

(Front row/seated)

Sande (Sandman123), living with rheumatoid arthritis

Brandy (Bstarks), living with fibromyalgia

This year marks the 5th anniversary of our Team of Advisors program! As in past years, this group is available to our members as a resource to the rest of the PatientsLikeMe community and you’ll be hearing more from them throughout the year. In the meantime, join us in congratulating this year’s team!

Join PatientsLikeMe or log in today to connect with these members (here in the forum or through their linked usernames above) and thousands of others who are living with health conditions like you.


Lupus Awareness Month: Lupus Warrior Jeanette recaps her D.C. advocacy trip

Posted 12 months ago by

In honor of Lupus Awareness Month, meet PatientsLikeMe member Jeanette, who recently traveled to the U.S. Capitol to advocate for lupus research funding. (Psst — here are some ideas on how to “Go Purple” this May and raise awareness of lupus!)

“I try to help the world,” says Jeanette Alston-Watkins (JeanetteA6872). The full-time working mom of two was diagnosed with lupus in 2005. She’s on the 2018 Team of Advisors (catch a quick video about her here) and is a passionate advocate for the Lupus Foundation of America.

Lupus Advocacy Summit recap

Jeanette recently attended the Lupus Foundation of America’s 2018 National Advocacy Summit in Washington, D.C. for the second year in a row. What happened at the summit? Take a peek at the agenda and read on!

“We met many young Lupus Warriors from around the country and they told us their stories and their fight with this disease,” Jeanette says.

On Day 1 of the two-day summit, Jeanette and other advocates heard from lupus researchers and drug developers about clinical trials for lupus treatments, particularly for childhood lupus and lupus nephritis (PatientsLikeMe has a Clinical Trial Finder where you can search by condition, location and more). Attendees also learned advocacy tips they can use year-round, practiced telling their personal stories and prepped for meeting with members of Congress to rally for lupus resources.

On Day 2, they converged on Capitol Hill to meet with legislators and make the case for lupus funding.

The “ask” from Congress

Last year, advocates like Jeanette helped secure $13 million for lupus research and initiatives. This year, lupus advocates asked U.S. Senators and Representatives for another annual investment in federal funding for lupus. Specifically, they’re seeking:

  • $7 million for the National Lupus Patient Registry at the Centers for Disease Control and Prevention (CDC). This helps the U.S. keep tabs on the national impact of lupus (in terms of cost and quality of life), and supports programs for patients and healthcare providers.
  • $2 million for the National Lupus Training, Outreach & Clinical Trial Program at the Office of Minority Health (OMH). Officials there help educate and enroll people in clinical trials of possible new treatments. Lupus can affect anyone, but non-white people face a higher risk, so it’s vital to include minorities in clinical trials.
  • $10 million for the Lupus Research Program at the Department of Defense (DOD). Until last year, the DOD’s medical research program (called the Congressionally Directed Medical Research Program) did not have a lupus-specific program. Now that it’s an area of focus (thanks to years of advocacy), lupus researchers are looking to do several specific studies about the condition.

In addition, advocates at the summit asked Congress for $38.4 billion for the National Institutes of Health — a $2.4 billion increase over last year — as a general investment in medical research that all health groups are seeking this year.

“The trip to D.C. was amazing and successful,” Jeanette says, noting that most members of Congress were receptive to lupus advocates’ “ask.” “Great time, great experience and great people all around the country advocating for lupus.”

Let’s hear it for Jeanette and other advocates! Interested in getting into advocacy? On PatientsLikeMe, more than 2,000 members with lupus include advocacy among their interests on their profile — join the community today to connect with Jeanette and others who want to make a difference!

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