Kelsey’s Kaleidoscope, Inc,: A New View for PAN
This year, we celebrate your generosity and appreciate your willingness to learn more about the rare disease we aim to cure. We hope to continue our efforts in 2018 to raise money in support of research efforts on an international scale.
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Rosemary Connors NBC10@Issue
Kelsey’s Kaleidoscope, Inc.: A New View for PAN was featured on NBC10@Issue with Rosemary Connors to raise awareness and share information about the disease we aim to cure and our fundraising efforts to date.
Second Annual Gala
Dr. Chip Chambers explained the terror or the rare disease dada2, which manifests as PAN for Kelsey, at our Second Annual Gala this November. Dr. Chambers is the former Chief of Endocrine Surgery at Vanderbilt University Medical Center in Nashville, Tennessee. He continues to hold his clinical faculty appointment at Vanderbilt, and he operates and teaches residents at the Veterans Affairs Medical Center. Dr. Chambers’ two children were diagnosed with DADA2 in March 2014, just one month after the first articles describing the disease were published in the New England Journal of Medicine. He has spent the last two years making connections among clinicians treating patients with DADA2 all over the world, as well as patients, their families, and researchers studying the enzyme.
During his informative and descriptive speech, he asked the question of all in attendace: “How would you feel if your five year old was having strokes and the doctors cannot tell you why or tell you what to expect next?”
Having lived through that pain, I can tell you the answer. The answer is fear of the unknown, fear of what you will wake up to every morning, and fear that you are not and have not done enough as a parent.
For those of you who attended our Gala, thank you. No parent wants to live in fear or to feel helpless for their child. Your support, generosity, and love helps spread feelings of hopeful over helpless.
We surpassed our efforts from last year and raised just over $25,000 that evening. We will continue to advocate and research in 2018.
Dr. Kate Rubins
Kelsey was able to meet Dr. Kate Rubins, the first astronaut to sequence DNA in space this April. Kelsey was given an opportunity to speak with Kate and ask her questions one-on-one as a dada2 patient through the NIH.
Dr. Rubins was poised, patient, wise, and a true role model. I would have hand picked Dr. Rubins for my children to meet. She, however, picked us.
Catching for a Cure
The Britto Agency organized a softball tournament on behalf of Kelsey’s Kaleidoscope, Inc.: A New View for PAN this September.
Twelve teams gathered at Pennypack Park on the Delaware to show off their softball skills and get the tournament win.
The Britto Agency helped us raise over $9000 during the Catching for a Cure event. We are forever grateful to all of you who played a role, large or small.
We thank you for your commitment, your generosity, and your support!
St. Paddy’s Day
On March 17, 2017 we hosted a St. Paddy’s Day Happy Hour to fundraise for our cause. Our collective efforts raised $4,000 on St. Paddy’s Day. Sláinte!
What is DADA2?
To read more about the gene deficiency that manifests as PAN for Kelsey, please click on the link below to learn more.