KD RARE DISEASE DAY FUND RAISER
My name is Ralph Frederick Briones and I was born and raised in the San Francisco, Bay Area. Over the past few years, I have raised over $25,000 for the KDA with my GoFundMe campaigns. This year, for our 3 year anniversary, I have organized a 2 day live-stream event on Twitch which will feature over 30 DJ's from the UK to the Bay Area. Sunday will focus on patient stories, cooking expositions, several dance performances and guest speakers.
The goal is to raise awareness of rare diseases, of which Kennedy's Disease is one, and to raise $5000 during the 2 day event and a total of $10,000 by the end of March.
Use this LinkTree to find out more and join in the fun!
The KDA is pleased to announce that Terry Thompson is the new KDA Board President.
Terry has been active in the KDA for several years, supporting his wife and fellow Board member, Kathy. He is passionate about finding treatments and a cure for KD, a disease that directly affects his family.
Terry completed a 45-year professional career that included 30 years of government service, starting with three years on active duty as an officer in the U.S. Marine Corps. He retired as a Senior Executive from National Security Agency and joined Booz Allen Hamilton where he rose to the position of Vice President. He now teaches graduate courses in cybersecurity at the Johns Hopkins University. He has a BA and MA from Wayne State University in Detroit, Michigan, and a PhD from Georgetown University. Terry is an avid golfer and has participated in the KD Golf Scramble in Magnolia, Texas. He enjoys other outdoor activities with Kathy, from walks around their neighborhood to hikes in the nearby Maryland mountains.
THE KDA IS AWARDED $2020.00 BY THE EUBIO MEDICAL DIVISION
The KDA is the award recipient of $2020.00. The award was given to the KDA by the Eubio Medical Division. Eubio has championed the study and treatment of countless diseases. The KDA was Eubio's December 2020 featured charity organization and award recipient. To read more about the gift and about the Eubio organization, please click here.
The KDA was nominated in honor of the late Dr. George Napper, Jr., who was diagnosed with this rare disease over 30 years ago. Inspired by his dedication and commitment to his wife of more than 58 years, Delores, Dr. Napper’s impressive career includes becoming the first Black police chief of Atlanta and serving as commissioner of what is now the Georgia Department of Juvenile Justice. An author and criminal justice professor, he also taught at Spelman, Clark Atlanta, and Emory Universities. This nomination was made by Dr. Napper’s son, Chipp Napper. The KDA board thanks the Eubio organization and Mr. Chip Napper for the nomination. To read more about the life of Dr. George Napper, click here.
RARE DISEASE DAY
February 28th is Nord's Rare Disease Day. The theme is show your stripes. To learn more, participate and register for the events, click here.
Rare Diseases and Orphan Products Breakthrough Summit October 18-19, 2021
The 2021 NORD Rare Diseases and Orphan Products Breakthrough Summit will bring the rare disease community together for education, collaboration and networking on October 18 and 19, 2021. For more information on this event, click here.
March 26-27, 2021. The Abilities Virtual Experience is back to connect you with the disability-focused resources your need from the comfort of your living room. Online Globally Open 24 hours each day Live interviews, workshops and activities: 7:00 am – 3:00 pm PDT. Thanks to all for the great feedback from the first virtual show. We kept everything you loved and improved on everything you didn't. So settle in for more engagement, more interactivity and more accessibility! For more information and to register, click here.
Making Everyday Life Easier: Adaptive Equipment and Recommendations. The Muscular Dystrophy Association has placed on YouTube their 2020 On-Demand Specialty Topic Presentations. The Making Everyday Life Easier: Adaptive Equipment and Recommendations by Dr. Kelly Casey who has practiced OT for 15 years at John Hopkins Hospital. The recommendations she has is relevant to anyone with Kennedys Disease who is looking for adaptive equipment to make life easier. To watch the YouTube video, click here.