Patient Advocacy

Washington – October 19, 2026 -- Tigerlily Foundation will hold two events at the Grand Hyatt Washington on Saturday, October 24, 2026, marking 20 years of operations: the 4th Annual BEACON Symposium and the 20th Anniversary EmPOWER Ball.

BEACON Symposium runs 9:30 a.m. to 2:00 p.m. ET on clinical trials and drug pricing

The daytime program, titled "Transformation with Patients Leading in Healthcare," will run under the theme "From Access to Action: Scaling Patient-Led Solutions for an Equitable Future." It will gather patient advocates, healthcare leaders, providers and scientific experts.

Two topics anchor the agenda: building more equitable, community-centered clinical trials, and how drug pricing policies affect patients and access. Organizers say collaborative sessions are designed to move participants from identifying problems to contributing potential solutions.

St. Louis – – October 06, 2026 -- Americans pay 422% more than patients in other countries for brand-name prescription drugs, according to RAND Corporation data, a gap that prescription-access firm SHARx is now targeting through an athlete-led awareness campaign called Rising Tides.

SHARx builds an ambassador network from personal relationships, not paid endorsement deals

CEO and co-founder Corey Durbin assembled the Rising Tides roster through direct connections rather than traditional sponsorship outreach. WNBA player Sophie Cunningham joined after University of Missouri broadcaster Mike Kelly introduced her to the cause. Former NFL quarterback Brock Osweiler met Durbin on a driving range before SHARx entered the conversation, and professional golfer Gary Hallberg linked Durbin to fellow golfer Steve Jones. Former NFL quarterback and three-term U.S. congressman Heath Shuler has also joined the initiative.

Washington – September 21, 2026 -- The American Association of Kidney Patients (AAKP) has endorsed Health and Human Services Secretary Robert F. Kennedy Jr.'s new appointments to the U.S. Preventive Services Task Force (USPSTF), following a years-long campaign by the group to force reforms on kidney disease screening policy. AAKP President Edward V. Hickey III said the appointees bring the diverse credentials needed to advance patient-centered medicine after what the organization calls two decades of Task Force inaction on kidney health.

Washington – September 19, 2026 -- More than 20,100 Americans signed a petition in just four days demanding Congress reauthorize the Accelerating Access to Critical Therapies (ACT) for ALS law before its September 19, 2026 expiration date.

Petition drive targets key congressional committees ahead of deadline

The campaign, organized by advocacy group I AM ALS during its annual Week of Impact, directs the petition at Senate HELP Committee and House Energy and Commerce Committee leadership. Signatories include patients living with ALS, caregivers, researchers, and clinicians who rely on programs the law established.

Little Rock, Arkansas – September 17, 2026 -- The American Association of Kidney Patients (AAKP) inducted Pine Bluff advocate Bob Abbott into its newly created Kidney Advocate Hall of Fame on September 10, opening the organization's 51st annual National Patient Meeting in Little Rock, Arkansas.

AAKP launches inaugural Hall of Fame class at Clinton Presidential Center

The induction ceremony took place during AAKP's Policy Forum session at the William J. Clinton Presidential Center, recognizing Abbott alongside medical experts, federal officials, and researchers as part of the Hall of Fame's first cohort. AAKP's tribute cited more than five decades of advocacy work by Abbott, owner and manager of Abbott Enterprises Inc. in Pine Bluff.

New York – September 14, 2026 -- Michael J. Fox, founder of The Michael J. Fox Foundation for Parkinson's Research (MJFF), has been named a laureate of the 2026 Lasker~Bloomberg Public Service Award, one of America's most prestigious biomedical research prizes. The Lasker Foundation cited Fox for "dispelling the stigma of the disease and spearheading a revolution in the world of Parkinson's research." More than 100 past Lasker Laureates have gone on to win the Nobel Prize.