Update

Hello all, first of all wanting to express many many thanks to those who have donated recently that I may have missed and to those who have shared this campaign or contributed multiple times. We are back from Tour with a few shows left for the year and playing catch up with multiple things so please forgive the delay in updates.

We are also trying to manage Frances’ medication adjustments due to seeing myoclonic seizures once again returning multiple times per day. This is deeply concerning and we hope to find something that helps get this under control asap.

These temporary fixes are not what we’re going for though, the main objective and focus is to find out what this disease specifically does, how it does it and why. The research into the mechanisms would provide us with better insight into what might help treat the symptoms besides the only option of anti seizure meds that don’t always work or cause traumatic experiences for the whole family.

We are so grateful to your continued support, please share this page whenever you can, and keep us in your thoughts. We’ve lowered our initial fundraising goal to 750k, in order to focus on each area with better direction and transparency. Once we achieve this goal we will move onward and upward and publish the next.

Frances was approved for an ASO treatment (YAY) but this is years in the making, not to mention at an institution that also needs a ton of fundraising support. They are after all, creating medicines for a single person. They are creating hope for those without any. Since she is not considered top priority with her symptoms currently, I cannot bank on this being the sole solution to this degenerative disease though I obviously pray that it will be. In the meantime I am tirelessly going down every other avenue possible. So far we have raised enough for 1 year of treatment that she would receive in hospital. The goal is that if Frances receives treatment successfully for a year or two, it could then expand out to others. It could then be considered a viable treatment option for more than 1 single patient. Let’s make this dream a reality. As I connect with more families who are affected by Dhdds it’s all I can think about. Rare disease is not rare it deserves some consideration. Families deserve hope.

We want to relieve the heartache and stress this puts on others who will receive a Dhdds diagnosis in the coming decades. Options for everyone come through massive amounts of private expensive research in record amounts of time. They come from someone going first and taking the brunt of the gargantuan costs.

So far you have helped make some of this a future possibility, along with a drug repurposing study phase 1/2 which is looking for molecules that might rescue some of the impacts of this disease. We are hoping it will yield some promising results by the end of the year fingers crossed. The next phases of this study will likely happen in the new year.

Again, thank you so much for your genuine caring and support, as we approach the end of the year we are reflecting on our blessings despite the set backs. Hopefully our 5th medication change will go smoothly and keep us in a safe place for another couple of years. We know that Frances feels the love and support and It keeps her dancing, laughing and enjoying her days.

Please continue to share this page and our Cure Dhdds USA charity site for those who need a receipt. The impact you make when you support a rare disease family goes far beyond just them.

Happy Holidays,

Zoe, John & Frances x