Every nonprofit dreams of a national morning show interview to help spread awareness about their mission. Celebrity endorsements, Cosmopolitan articles and an exploding media presence are usually too much to hope for. But that’s what happened this week. The spotlight has been on our rare disease these last few days thanks to Kristen and Gordon Gray. A few months ago, their daughters, Charlotte and Gwenyth, were diagnosed with CLN6, a rare form of Batten disease. Like so many families affected by this horrible disease, they are doing everything they can to save their kids. In the Gray’s case, they are using their Hollywood connections to raise funds for research and we are so appreciative that their efforts have brought international attention to Batten disease.
The Grays called BBDF shortly after they received the diagnosis. They were encouraged by our strategic approach and the research we are funding and through us could see the power of partnering in action. Unfortunately, there are many forms of Batten disease. While they share a name, all forms of Batten disease are different in terms of research and potential treatment options. Currently there is promising research going on in all the forms, unfortunately there is no known cure for any of them. How wonderful it would be to cure them all!
Awareness is an important part of our mission and the Grays took that to a new level this week. Over the last 7 years, you too have used your talents and resources to help the Bensons and Herndons tell their stories, sharing juvenile Batten disease information with your friends and families and spreading the word far and wide. We can never thank you enough. Keep up the good work! The foundation will continue to work with all related Batten disease groups where we have common research interests. And we urge you to please take advantage of the opportunities provided by the Grays to remind your communities why you care about this disease, BBDF and our mission.
Please don’t hesitate to reach out with questions, concerns or new ideas that have been generated by the recent attention. Thank you for giving hope to kids like Christiane, Will, Charlotte and Gwenyth!
Mary Beth Kiser
President and CEO
Have you ever wondered if you are relevant, significant, or if anything you do really matters? Sometimes I get moving so fast, occupied with my daily activities, and whirling in a million directions, that I wonder at the end of the day, if any of it really mattered…….does anything I do count?
I received a card in the mail the other day from Whitney, a childhood friend, and the cover read: “Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible” – Francis of Assisi.
That gave me pause for reflection because certainly Craig and I know that Beyond Batten Disease Foundation was created by a “necessary” response to give hope to our child, Christiane. What came next was the “possible” with the creation of the foundation and the extraordinary contributions of our friends and community. While our destination is certainly to accomplish the” impossible,” what’s striking to me is how amplified that concept becomes when an entire community is simultaneously contributing to that phenomena. Continue reading