Our 25th anniversary year in 2021 has been one of reflection for me. I have so many memories – both wonderful and heartbreaking.
Watching our NBIA community grow over the years, I’ve seen it remain tight-knit and welcoming, a goal from the very beginning. We provide comfort and support to families, whether they have a newly diagnosed loved one or are struggling to get information and support. We continue to educate and raise awareness about NBIA disorders around the world; our community is global. We have nine sister organizations working in tandem with one another, helping the science move faster in our quest to cure all NBIA disorders.
When I look back at the progress we have made, I am proud. Ten NBIA genes have been discovered, with our organization funding the research that made it possible for many of them. Seven scientific symposiums on NBIA have been held, with our organization taking the lead on three, and playing active roles in the rest. We held our 11th international family conference this past May and though it couldn’t be held in person, we reached more families than ever before: 175 from 27 countries.
But seeing fellow NBIA families still losing their loved ones proves that our fight is far from over. I hope that in the coming year we can give renewed emphasis to awarding research grants. Even though we have continued to make grants to researchers responding to our priorities, the pandemic has sharply curtailed the wonderful family-sponsored fundraisers that remain our research fund’s bread and butter.
This fact underscores the importance of our supporters. Without all of you, we could not achieve our goals. My deepest gratitude goes to all who have believed in our mission these past 25 years. I hope you will help us continue the fight until that happy day when we are no longer needed.