Forest Lake resident Rich Cloud is on a mission.
Four years ago, he and his wife, Ann, discovered that their one-year-old daughter, Ashley, had Congenital Muscular Dystrophy (CMD).
While traveling around the country for IBM, his former employer, he made visits at the same time with various scientists and organizations affiliated with the congenital muscular dystrophies, a group of diseases that cause muscle weakness at birth and progress over time so that muscles break down faster than they can repair or grow.
To his dismay, he learned that there was no organization tracking children with CMD, research was stalled and little progress had been made on clinical trials for drugs that could slow progression of the disease.
With hopes of finding a treatment or cure, last year he and two other parents passionate about improving the lives of their children and adults living with the disease launched Cure CMD, a Minnesota-based nonprofit. The fledgling organization, run entirely by volunteers who fund general operations with their own resources, has made astonishing progress.
In one year, Cure CMD has brought together leading scientists from around the world to share their findings. This month, the nonprofit also launched an international registry in different languages to locate an estimated 5,000 to 10,000 children living with CMD internationally. Cure CMD is also developing standards of care for doctors who have little or no information about CMD but need to know how to accurately diagnose children early and give parents good guidance on how to care for their children.
“We are making very exciting progress,” said Cloud, chairperson for Cure CMD and Group Manager with Avanade, a multi-national technology consulting company. “As a result of our summer medical conference, 22 potential therapies were identified—including some already in existence for other diseases that hold promise for the CMD’s. With help from leading scientists and government research grants, we are developing a roadmap to clinical trials and have high hopes to have several therapies available in the near future.”
So far, Cure CMD has raised $250,000 in grant support and donations from parents and supporters who have created fundraising events on their own, all to benefit research. One mother in England raised $100,000 for Cure CMD by organizing events in her community.
Locally, Cloud is organizing a golf tournament on Sunday, Sept. 13 at Tanners Brook Golf Course in Forest Lake. Many local businesses are providing financial support and golfers. Former Vikings great “Joey Browner” will be among celebrity golfers supporting the cause. Prizes include a car (for the lucky hole-in-one golfer), a fishing trip, prize monies and golf gift cards for every player.
To register for the golf tournament, call Rich Cloud at 651-730-1611.
For more information about Cure CMD, visit www.curecmd.org.