Outpouring of Help and Hope for Loving Father with Rare Disease

 Emily Progin, PR and Communications Coordinator

eprogin@helphopelive.org / 800.642.8399

Release: Immediate

OUTPOURING OF HELP AND HOPE FOR LOVING FATHER WITH RARE DISEASE

Fundraiser Will Help Pay Back $10,000 Wheelchair Van

POCATELLO, Idaho—Ten years ago, James Herndon received unthinkable news when he was diagnosed with Kennedy’s Disease, a rare neuromuscular condition that would severely impact his life and future. Today, Jim is expressing his gratitude to the Pocatello community for giving hope to his family by contributing to a new fundraiser at helphopelive.org to help him pay back a generous gift.

In May 2008, Jim was diagnosed with Kennedy’s Disease, also called spinal bulbar muscular atrophy, after years of increasing weakness. Incurable and non-treatable, Kennedy’s Disease affects the spine and neurons, leading to neurological issues such as difficulty swallowing and breathing, plus muscular cramps and progressive mobility challenges. The diagnosis affects just one person in 40,000.

At the time of the diagnosis, Jim was living in his home state of Indiana with his wife, Shanna, whom he met online in 2000. By October of 2008, Jim was no longer able to work. The couple agreed to move back to Shanna’s hometown of Pocatello to access a stronger network of support with family and friends. They have lived in Pocatello since 2009—Jim is a father and stepfather of eight.

Since the move to Pocatello, Jim’s mobility has been reduced from using a cane to using two canes to using a wheelchair full-time. He has not walked since February 2019. Their family relocated multiple times to help accommodate Jim’s mobility, finally arriving at an accessible apartment in Hawthorne Gardens. Jim’s wife attended Indian Hills Elementary, Irving Middle School, and Pocatello High School. They are members of the Church of Jesus Christ of Latter-Day Saints—Jim says they have made many friends in the Pocatello/Chubbuck area through church attendance.

“This community has already blessed our family with many opportunities,” said Jim. “We’ve been able to enroll our daughter and granddaughter in Girl Scouts, engage in youth programs through the church and community, and access vocational training for our children as they transitioned from teens to adults. I have also received excellent healthcare in this community, and I am thankful for that.”

Jim loves Pocatello, especially Snake River Doodles and Friends, a business that breeds labradoodles (many of which become service dogs); Geronimos, where his son, Nick, worked; Deleta Skate, a business that helped him fundraise for a service dog in 2014; Palace Playhouse (formerly Mystique); the Soda Barn; and Butter Burrs—“I used to go out to breakfast with my grandparents as a child, and Butter Burrs gives me that same feeling when I take my family out,” said Jim.

Jim is grateful for all the help and hope he has received so far. He is now extending a special plea through a new fundraising campaign with the national nonprofit Help Hope Live at helphopelive.org.

“When I lost my ability to walk, I lost much of my ability to interact with the world, especially now with COVID-19,” he explained. “I needed a wheelchair accessible vehicle to get back in touch with this amazing community.” Insurance refused to cover the cost of anything beyond medical travel, leaving Jim and family with a price tag of $10,000. His mother put the charge on her credit card—and today, Jim is fundraising to pay her back.

You can make a donation in honor of Jim at https://helphopelive.org/campaign/17666/ or by calling 800-642-8399. Donations are tax deductible to the extent allowed by law, and all funds raised will be managed by the nonprofit to cover verified medical and related expenses. Help Hope Live verifies medical and financial need for every patient.

Help Hope Live is a national nonprofit that specializes in engaging communities in secure, tax-deductible fundraising campaigns for people who need a transplant or are affected by a catastrophic injury or illness. Since 1983, campaigns organized by Help Hope Live have raised over $145 million to pay patient expenses. ###