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Advocacy

All articles tagged with #advocacy

Brooke Eby, ALS Advocate Who Built Global Community, Dies at 37
obituaries8 days ago

Brooke Eby, ALS Advocate Who Built Global Community, Dies at 37

Brooke Eby, a Montgomery County resident and prominent ALS advocate, has died at age 37. Diagnosed at 33, she used social media to humanize the disease and founded ALStogether, a peer support network. In 2026, she integrated ALStogether with the ALS Network and received the Dean and Kathleen Rasmussen Advocate of the Year Award. Her legacy includes raising over $1 million for research and reshaping public understanding of ALS through candid, humorous storytelling.

via Bethesda Magazine|
#advocacy#als#alstogether
Alpha-Gal Syndrome Reshapes Lives and Fuels Policy Debate
health27 days ago

Alpha-Gal Syndrome Reshapes Lives and Fuels Policy Debate

Alpha-gal syndrome—a tick-bite–triggered allergy to red meat and other mammal products—shapes daily life for patients nationwide, spurring Erin March and daughter Alexis Cottrell to launch an alpha-gal–friendly business, highlighting the need for more research and a federal labeling act; state health officials in New York are building a diagnosis database while advocates call for safer labeling and broader access to appropriate medicines, alongside practical prevention tips such as using insect repellent and promptly removing ticks.

via spectrumlocalnews.com|
#advocacy#alpha-gal-syndrome#food-allergy-labeling
From Utah to D.C.: Utah grad with stage 4 cancer pushes for broader clinical-trial access
health29 days ago

From Utah to D.C.: Utah grad with stage 4 cancer pushes for broader clinical-trial access

Joseph Mutalwa, a University of Utah graduate diagnosed with stage 4 prostate cancer, traveled to Salt Lake City to participate in a clinical trial and will head to Washington, D.C. for the American Cancer Society Cancer Action Network Leadership Summit to urge lawmakers to boost federal cancer research funding and expand access to clinical trials, including support for the Clinical Trial Modernization Act. He aims to bring attention to patient barriers like travel and costs, having previously met Utah Gov. Spencer Cox, and plans to advocate with Utah’s congressional delegation.

via KSL.com|
#advocacy#cancer#clinical-trials
Elizabeth Smart Finds a Personal Victory on the Bodybuilding Stage
lifestyle1 month ago

Elizabeth Smart Finds a Personal Victory on the Bodybuilding Stage

Elizabeth Smart shared a video of her recent bodybuilding competition, posting that she had 'such a blast'—even though she placed bottom in both Masters 35+ and Open Class D—emphasizing that simply stepping on stage is a win for her. The 38-year-old mother and advocate, who was abducted at 14, uses her platform to highlight resiliency and her ongoing work helping missing persons and abuse survivors, noting that her upbringing and past experiences influence her willingness to publicly share her journey.

via TODAY.com|
#abduction#advocacy#bodybuilding
Springfield advocates call to end ICE ankle monitors after Haitian student’s death
local1 month ago

Springfield advocates call to end ICE ankle monitors after Haitian student’s death

Springfield community leaders are pressuring state and federal officials to end ICE ankle monitors following the death of Pierre Damas Bel, a 20-year-old Wright State student who allegedly faced humiliation and bullying due to the GPS device. Advocates say the stigma surrounding the monitor contributed to his despair, while authorities note his immigration proceedings and status; a press conference at Central Christian Church highlighted calls to end the program amid broader concerns about its impact on Haitians in the community.

via Springfield News-Sun|
#advocacy#ankle-monitors#haitian-immigrants
Hayden Panettiere's Final PETA Campaign Highlights a Lifetime of Animal Advocacy
entertainment1 month ago

Hayden Panettiere's Final PETA Campaign Highlights a Lifetime of Animal Advocacy

Hayden Panettiere's last PETA campaign was filmed in Los Angeles weeks before her death at 36, featuring her in a bathtub protest against marine parks as a capstone to a lifelong animal-welfare career that included protests against dolphin hunts in Taiji and activism with the Whaleman Foundation; authorities say autopsy found no trauma and the cause of death remains under investigation, with the DEA assisting.

via Fox News|
#advocacy#dolphins#entertainment
Sisters Face Kidney Stones 24 Hours Apart, Turn Experience Into Bond and Awareness
health1 month ago

Sisters Face Kidney Stones 24 Hours Apart, Turn Experience Into Bond and Awareness

Two Duke University sisters, Claire (20) and Lilyana (23), were treated for kidney stones within 24 hours of each other—Claire had a 9 mm stone removed, and less than a day later Lilyana required emergency surgery for a 14 mm stone that blocked her ureter. Both recovered, Lilyana’s chronic pain resolved after the procedure, and the pair shared their story on TikTok to raise awareness and advocate for better understanding of kidney stones in young women and listening to patient concerns.

via Yahoo Lifestyle Canada|
#advocacy#duke-university#emergency-surgery
Brothers Turn Tragedy Into a Mission: 99.9% Dementia Risk Drives Global Fundraising
health1 month ago

Brothers Turn Tragedy Into a Mission: 99.9% Dementia Risk Drives Global Fundraising

Two brothers, Jordan (31) and Cian (26), both carrying a 99.9% risk of developing the same rare dementia that killed their mother, Geraldine, have launched the FTD Brothers foundation and raised about $4 million by performing extreme endurance stunts and building a social following of over 1 million to raise awareness and fund research. Their feats include the London Marathon carrying a 55-pound fridge, 33 marathons in 33 days, and other endurance challenges, as they push to build a lasting legacy as they confront the disease in the years ahead.

via AOL.com|
#advocacy#frontotemporal-dementia#fundraising
Breathless to Breakthrough: A Non-Smoking Mom Defies Stage 4 Lung Cancer
health2 months ago

Breathless to Breakthrough: A Non-Smoking Mom Defies Stage 4 Lung Cancer

Summer Farmen, a 44-year-old Pennsylvania mom with three kids, began experiencing severe breathlessness in early 2020 and was diagnosed with stage 4 alk-positive lung cancer—a rare, non-hereditary mutation highly treatable with targeted therapy. Though prognosis was grim, she has lived more than six years and become a patient advocate through Alk Positive Inc., funding research, leading support programs, and educating others about treatment options and clinical trials while continuing regular scans and treatment.

via Business Insider|
#advocacy#alk-positive#cancer-survivor
Tick-bite allergy drives push to classify alpha-gal as major allergen
health2 months ago

Tick-bite allergy drives push to classify alpha-gal as major allergen

Advocates are pushing to classify alpha-gal syndrome — a meat- and dairy-allergy triggered by lone star tick bites — as the 10th major food allergen, a move they say would improve labeling and protections. The effort includes outreach to lawmakers, like Rep. Jake Auchincloss, and personal stories such as Erica Pernell’s about needing to check medications and foods for animal-derived ingredients.

via The Boston Globe|
#advocacy#alpha-gal-syndrome#food-labeling