Visit to NYC
Last week Hoda Kotb gave us the opportunity to talk about Frances and her rare disease. We are so grateful for the help in raising awareness not only for DHDDS but the difficulties the whole community faces.
This is why we put together this more informative franceschangedmylife.com website and continue to put in the efforts to fund crucial research and aid in the advancement of healthcare. We also now have another fundraising platform linked, besides Go fund Me, for those who require a receipt. We really are juggling it all!
We are hopeful that one day (in our lifetimes) through all this hard work and support, kids like Frances will have options that in past decades have been non existent. The kind of options that improve quality of life and help to majorly slow disease progression if not stop it all together.
Every little bit of progress matters as we are entering a new time, a REAL focus on genetics & genomics. Genetic testing accessibility is helping to gather the necessary patients and data needed to better understand what people are going through and what is going to help them the most. All the work now in this moment is SO valuable to their futures. We dream of a time where people do not have to wait an average of 8-10 years to figure out the underlying reasons for all their symptoms and pain. Or a time where they’re not told it’s 2-5 million to develop a possible treatment. Meeting our initial fundraising goal of 750k would get us off to the best possible start and support many research projects. It could also help her in the coming years when she has to be the first of her disease type to trial treatment without insurance help.
In the last couple of months Frances started having more seizures that required another add on strong medication. We had to go into this trip seeing her out of it and wondering if she was going to be able to handle it. For now things have improved, but for how long we simply do not have the luxury of knowing. This is why we continue to work toward something better. Time is of the essence.
If you would like to follow Frances and her experiences, her infectious joy and dancing, please follow our (Frances changed my life) socials on Instagram, Tik tok & YouTube.
Thank you to Hoda and The Today show for having us and shining a light on what we and so many others are going through all over the world.
