Kathryn McGhee has been an active member of our PWS community for 22 years, participating in numerous letter-writing campaigns and PWS clinical trials and hosting over a dozen fundraisers for FPWR! As a proud mom to Hannah (who recently turned 23), Kathryn is unstoppable in her efforts to brighten the future for her daughter and everyone with PWS. Kathryn recently hosted a new fundraising event, HopeFULL, in Lewisville, Texas. We asked Kathryn to share a bit about her event and what motivates her to host her fundraisers.
Discover Kathryn's story and learn what drives her unwavering commitment to the PWS community.
I want to do everything within my power to ensure that Hannah’s future (and that of her friends with PWS) is the best that can be given the diagnosis. I believe that with treatments, they can live life FULL. That is why I have been fundraising for research for the last 22 years!
Raising PWS awareness and critical research dollars is crucial to ensuring treatments are found for individuals and families affected by this condition. We know that medical research will lead to treatments that eliminate the many hurdles that our loved ones with PWS face on a daily basis.
We are a rare community, and we (the parents and families of people with PWS) have to take action if we want treatments to happen. PWS research is funded nearly 100% by parent fundraisers in our community. These efforts have led to numerous important discoveries, and we currently have eight clinical trials enrolling that are addressing the many symptoms of PWS!
I hope for a future where medical treatments can eliminate the many hurdles that our loved ones with PWS face on a daily basis. I hope for Hannah to live her life to the FULLest and to live life FULL.
We are fortunate to be in a clinical trial right now for a medication that greatly reduces hunger and anxiety for our daughter. This treatment not only helps our daughter, but it makes life better for all of our family. I know that with continued research, we will see more treatments become available that will open new opportunities for our daughter’s future.
HopeFULL was a casual afternoon gathering at a local restaurant that offered drinks and light bites and had a small silent auction. About 70 people were in attendance, including 12 PWS families! You could really feel the love, support, and hope generated by all in attendance. We were so moved by the incredible support we received for this event.
Early on, we reached out to local families, formed a committee, and found a location. We kept everything very simple. We started promoting the event about 6 weeks in advance and asked for monetary donations and raffle or auction items for our event. I am always blown away by how generous the community is when I ask for donation items!
I have hosted countless events through the years, and this one was the easiest! FPWR helped support this event by creating signage and social media images, setting up an event website, and offering fundraising tips. This was so helpful in taking the burden off me and helping to make our event successful!
Yes! Just jump in and try something! You can receive great tips and support from the FPWR fundraising team. It doesn’t have to be a big event because every little bit helps and adds up. It is a wonderful feeling to connect with other like-minded families and know that you are making a difference for the future of our loved ones. We will most definitely host another event like HopeFULL.
We have been blessed to see how far research has come in Hannah‘s lifetime. There is still work to do to make that dream happen, and we will not stop until this dream becomes a reality.