What is your organization’s mission statement?
Our mission is to raise awareness and funds for Sanfilippo research that will lead to a cure and to instill and sustain hope for families impacted by this disease.
What population do you serve?
We serve families and children with Sanfilippo Syndrome, which is a very rare and terminal genetic disease affecting 1 in 70,000 births.
How many do you serve in a year?
By funding research to find a cure, we are contributing to an effort that can benefit all families that are dealing with this disease.
What region or area do you provide services in?
Reagan’s Hope raises awareness and funds throughout the greater Columbus area for Sanfilippo research that will lead to a cure. Currently, funds are being raised for gene therapy research that will take place at Nationwide Children’s Hospital and that could lead to human clinical trials in 2015.
How and when did the organization get started?
In February of 2014, Peter and Karin McGee’s 2 year old daughter, Reagan, was diagnosed with Sanfilippo Syndrome, otherwise known as Mucopolysaccharidosis IIIA (MPS IIIA), a rare and terminal genetic disease that affects children. It has no cure or treatment. They were told that Reagan will slowly lose all the skills she has gained, including the ability to talk, walk, and even swallow, eventually leading to death in the early teen years. Thus, Reagan’s parents founded Reagan’s Hope, A Cure for Sanfilippo Foundation to raise awareness and funds to find a cure for this disease and to help all children affected with Sanfilippo Syndrome.
How many employees do you have?
We have no paid employees. Reagan’s Hope is a small but growing initiative that is currently run by it’s founders, Peter and Karin McGee, as volunteers.
How many volunteers does your organization have? (click the “Service Projects” tab to learn more about volunteer opportunities)
So far, we have had more than 10 volunteers helping to organize fundraisers in support of Reagan’s Hope, such as Purple Lemonade Stands and charity workout events. Since we are a new organization, we are still working to create volunteer opportunities and look forward to making those available soon for future fundraising events.
How do your programs or services help the community?
Finding a cure or treatment for Sanfilippo Syndrome will mean affected children will not have to suffer anymore. They will have the promise of a long and full life, with the ability to grow and develop to their full potential. When a cure or treatment is found, no parent of a Sanfilippo child will have to hear that there is no way to protect their child from pain and suffering. And no parent will have to say good-bye to their child way too soon. If the gene therapy and testing at Nationwide Children’s Hospital proves to be effective, it could lead to helping find cures or treatments for other diseases as well.
Raising Funds and Awareness: Our mission is to raise awareness and funds for Sanfilippo research that will lead to a cure. Currently we are raising funds for gene therapy research at Nationwide Children’s Hospital that could lead to human clinical trials in 2015.
Name: Karin McGee
Title: Vice President, Co-founder
P.O. Box 330
New Albany, OH 43054