Helping a Cure Become Reality

Jan 2, 2018 | Features, Medical Research, Philanthropy Journal

For over 22 years, The Children’s Medical Research Foundation, Inc. has been raising awareness and funding to find a cure for Sanfilippo B Syndrome.

Kirby, 1995

By Haily Jones

Sometimes, we let money or rejection interfere and keep us from achieving our goals, but in the nonprofit world, these things can’t hold you back. The worry of funding for your organization should not stop you from doing everything you can to achieve your mission. The Children’s Medical Research Foundation, Inc., formed in 1995, has not let their drive to save lives be influenced by money or others telling them that their mission was impossible. They believe in the research being done for their organization.

When R. Bradford and Susan M. Wilson got the news that their then four-year-old daughter, Kirby, was diagnosed with Sanfilippo B Syndrome, they founded The Children’s Medical Research Foundation. At the time of Kirby Wilson’s diagnosis, there was no cure and they found only one researcher looking into the causes and potential cures for Sanfilippo. The organization’s purpose from then on was to raise public awareness and funds to support medical and scientific research into the causes of and cures for Sanfilippo Syndrome, and other neuro-genetic diseases afflicting children. Those diagnosed with Sanfilippo are unable to break down a complex body sugar called heparan sulfate. Heparan sulfate builds in the brain to stop normal development and causes various symptoms. Those with Sanfilippo Syndrome typically experience death before adulthood. The founders of this organization refused to believe a doctor’s words that there was “nothing that could be done” to save their daughter’s life. If more researchers were interested and researching Sanfilippo, a cure could be found faster. This gave The Children’s Medical Research Foundation, Inc. hope and the desire to spread awareness and raise funds for research to find a cure.

While awaiting 501 (c)(3) status from the Internal Revenue Service, the Foundation started with a small amount of seed money from its founders and close friends. Printed material was developed and preliminary fund-raising events were planned. The 501 (c)(3) status was received November 8, 1995. By the time the Foundation had received its IRS 501 (c)(3) status it had already received publicity from ABC-TV News, CLTV, and THE CHICAGO TRIBUNE, as well as local newspapers. In December 1995, a “Holiday Letter” was distributed to introduce the Foundation and its mission. Plans were made for a “kick-off” black tie dinner dance in February of 1996, and fund-raising was done by a local restaurant and church. Raising awareness to as many people as possible was a huge success, as the organization gained funds, volunteers, and further research for Sanfilippo. With more supporters and volunteers, this organization had many advocates to help raise awareness and raise even more funds for research. No matter what your organization revolves around, you have to be passionate and willing to fight for change. Raise awareness for your organization, and be proud in doing so.

That’s what worked for this organization. They kept raising awareness, and with that brought more supporters who raised awareness as well. “Make sure to show the faces of the people, animals or conditions you are trying to help, save or change, because pictures with words are powerful,” said Wilson. “And if you are a small organization make sure you express that as well.  The little guys trying to bring about big change can be an advantage over more easily recognized organization.” There are people who want to hear your story and help, but it’s up to the organization to keep pushing on and make a real difference.

Since their establishment in 1995, The Children’s Medical Research Foundation, Inc. has granted over $4.25 million to eight research groups. Because of their drive to save lives and advocate for more funding, this organization went from having a small amount of seed money to being able to grant over $4.25 million toward research. More researchers have looked into the causes and cures for Sanfilippo, and are now on the verge of a breakthrough with finding a cure. This organization has continued to raise awareness and funds from supporters for 22 years to save kids’ lives. They want kids to live the lives they deserve to live, and that is what keeps them going. Co-founder and President of the Children’s Medical Research Foundation, Susan Wilson, encourages other nonprofit organizations to “speak from your heart and show your passion for the mission.” The organization has brought awareness and raised funds through a variety of events like their annual “Sweetheart” black tie dinner and dance held in February. Other fundraising activities included a “Fore Kirby” Golf Fun Raiser along with a “5K4 Kirby Fun Run/Walk” and the “KirbyGrams,” the Foundation’s annual newsletter. The Children’s Medical Research Foundation, Inc. doesn’t let the worries of money stop them from fighting to save lives, and they appreciate every bit of support they receive in various forms.

On October 31, 2017 it was announced that a human gene therapy clinical trial will take place for what the organization hopes is the cure to Sanfilippo. After 22 years, this might be the ultimate opportunity for all of the time and effort founders and supporters have put into making the cure for Sanfilippo a reality. None of this would be possible without The Children’s Medical Research Foundation and other similar family foundations that, over the years, have joined the Wilsons drive to save kids’ lives and not take “no” for an answer. Letting the fear of rejection can keep you from making real change in the world, but this once small organization has made big change in the search for a cure for Sanfilippo.

Haily Jones is an undergraduate student in the English Education Department at N.C. State University.

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