COVID19 vaccination in patients with spinal and bulbar muscular atrophy

The Sunnybrook ALS/Neuromuscular clinic at the University of Toronto follows a large number of patients with Kennedy’s Disease (KD). Since patients with KD may experience respiratory impairment and are at increased risk of complication of respiratory infections. The Sunnybrook clinic recommends that KD patients be a priority group to receive vaccination for COVID-19. To read the letter, click here.

Dr. Christopher Grunseich, MD, a staff clinician at the National Institutes of Health has evaluated patients with spinal and bulbar muscular atrophy (SBMA) in multiple clinical studies and mentions in a letter that serious, life-threatening complications due to Covid 19 would be mitigated with COVID19 vaccination. To read the letter, click here.


RareDiseaseDay2021FundRaiser 3Thank you to Ralph Briones and his Briones family who raised over $18,000 for the KDA. A-MA-ZING!  His original goal was $5000 over the weekend which was surpassed on day one.  It was a pleasure to watch the Rare Disease Day - Bay Area event unfold.  The dance, the cooking, the food demos, all so great.  

  


TerryThompson

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 

The KDA is awarded $2020.00 by the eubio medical division. 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.


 RESEARCH UPDATE

Effect of leuprorelin in bulbar function of spinal and bulbar muscular atrophy patients: observational study for 1 year.

This study aimed to investigate the effect of androgen suppression therapy using leuprorelin focused on the bulbar function of patients with spinal and bulbar muscular atrophy (SBMA). To learn more, click here.


NORD

2021 Living Rare, Living Stronger NORD Patient and Family Forum

June 26th and June 27th is the 2021 Living Rare, Living Stronger NORD Patient and Family Forum, a two-day virtual event bringing together rare patients and families to learn, network and participate in wellness and entertainment sessions. With many educational topics offered for undiagnosed, newly diagnosed and long-term patients and caregivers, attendees may customize their schedule to best fit their interests. Your registration also includes a ticket to the  Rare Impact Awards on June 28th, an annual celebration honoring the individuals, groups and organizations making a difference by going above and beyond for the rare disease community For more information, 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. 


 

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