It's fall, and we've had a beautiful season so far in Southern Oregon, with sunny skies, and gourgeous fall colors. Kayla just finished her first volleyball season, Peyton is having fun in Youth Group, and Jonah is doing a little of everything!
Peyton and Kayla are continuing their IV treatments, now 6 times per month, and we have the schedule listed on our website if anyone can stop by and say hi! (thanks for the reminder Julia!) We have now submitted our proposal to the FDA to begin the injection treatments in Oakland, and are hoping to begin within the next month. We are very excited and hopefull that we are able to do the treatments, and that they will have an even greater benefit for the kids.
They seem to be "holding their own" with the IV treatments. Their doctors all agree that they do not see much advancement of the disease at all from last year, which is great news. We really feel that the Cyclodextrin treatments are significantly delaying the effects of NPC!
The Hadley Hope Fund Board of Directors has recently decided to shift our funding efforts. Instead of research grants, we would like to focus now on clinical research. In other words, out of the lab, and into the patients! This is critical, as we need to have all families that want to have access to treatments, be able to.
Of course this is even more crucial now for us to put our efforts into raising enough funds to pay for this clinical work. Everyone is well aware of how difficult it is this year to fundraise, and we are deeply grateful to everyone that has supported us both financially, and emotionally this year. Attendance is down this year for our annual Harvest of Hope Dinner, which is just over 1 week away! If anyone can still attend, please register online now at:
If you are unable to attend, or live out of the area, please consider sponsoring a table or seat at the event, and we will fill the seats for you with guests that may not be familiar with Hadley Hope yet!
Blessings to everyone,
Bryan and Laura