Help Richard Johnson Bring Alpha-1 To the Winner’s Circle

October 01, 2013   |   
I Care 0 Cares

Today, the Alpha-1 Foundation has a unique opportunity to help children with Alpha-1 - a genetic form of COPD. Richard Johnson, a longtime supporter of the Foundation, is one of four finalists vying for the NASCAR Foundation’s Betty Jane France Humanitarian Award. If he wins the $100,000 award, it will be donated to the Alpha-1 Foundation to fund vital research programs. The winner is determined by who receives the most votes; each person is permitted to cast a vote once a day at NASCAR.com/award until Dec. 5.

Richard became devoted to the fight against Alpha-1 Antitrypsin Deficiency in 2008 when his two young children, Grace and Lucas, were diagnosed with the genetic condition, which can lead to life-threatening liver and lung disease. There is no known cure. Alpha-1 is a leading genetic cause of liver transplantation in children like Richard’s, a risky solution for which something better must be devised.

“The Alpha-1 Foundation congratulates Richard on his nomination as a finalist for the Betty Jane France Humanitarian Award,” says John Walsh, president & CEO of the Alpha-1 Foundation. “We are grateful for his leadership in fundraising and awareness efforts, and he richly deserves the honor. If Richard wins the award, the Foundation will receive a total of $100,000 that will be entirely spent on research for a cure for Alpha-1. And I cannot overstate the importance of the Alpha-1 awareness that will be generated if Richard is named the Humanitarian Award winner on national television; Alphas everywhere, both children and adults, will benefit. We urge everyone in the Alpha-1 community to vote for Richard every day till Dec. 5!”

For years before his children were diagnosed, Richard helped start the Jacksonville School for Autism for severely autistic children, organizing events and raising money. Inspired by how deeply those children’s lives were enriched, he became a tireless advocate in raising awareness and funds to get desperately needed help for children with Alpha-1.

Richard created and hosts an annual “Friends for a Cure Golf Tournament,” whose proceeds benefit Alpha-1 Foundation research programs. He travels throughout the country speaking to families about the urgency of early testing for kids, raising research funds and awareness of the little-known condition. He works to develop informational materials for families, championing early testing and research. He and his wife, Sarah, launched the Alpha-1 Foundation’s “It’s All in The Family” campaign, creating a video testimonial and brochure encouraging families to be tested. The couple have an annual letter-writing campaign to spread awareness and are peer support group leaders for families with Alpha-1 kids. Richard is an advisor to the Alpha-1 Foundation on creating programs to serve families of children with Alpha-1. Over five years, Richard has raised more than $100,000 for Alpha-1 research programs.

Richard’s peer support leadership, advocacy, event organization and fundraising have been an invaluable source of help and hope to families of Alpha-1 children with few resources and in difficult circumstances. His commitment to supporting and participating in Alpha-1 liver research, which has begun to yield results, offers promise for countless children with the condition.

A NASCAR fan since his father took him to his first Daytona 500 at age 8, Richard cherishes memories of days they spent at the Speedway, and plans to continue the tradition with his own son. Richard’s father worked with a relative of legendary NASCAR driver Richard Petty, and Petty has always been a hero to Richard.

Richard’s efforts help children with Alpha-1 across the country by increasing awareness of issues affecting children with the condition, and by sharing his family’s experiences with others in the same situation. If Richard wins the Betty Jane France Humanitarian Award, the $100,000 donation will provide funds urgently needed to support research programs toward better treatments and a cure for children with Alpha-1.

You can help by voting for Richard Johnson, once every day, at NASCAR.com/award, and spreading the word.

### 

About the Alpha-1 Foundation:
The mission of the Alpha-1 Foundation is to provide the leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha-1 Antitrypsin Deficiency. For information, visit www.alpha-1foundation.org.

About the NASCAR Foundation:

The NASCAR Foundation embodies the compassion of the NASCAR Family and its commitment to serving communities. It seeks to raise funds and increase volunteerism to support nonprofit charities and charitable causes throughout the nation with an emphasis placed on initiatives that affect the ability of children to live, learn and play. For information, visit foundation.nascar.com.

Join Us on COPD360social

Sign In to Participate
Or register to become a member
6.3COPD