In February 2017, our nephew was diagnosed with Kleine-Levin Syndrome.
We had never heard of this disorder. Why would we have heard of it? It is so rare, extremely rare, beyond rare. The rarity is both a blessing and an extreme difficulty. The blessing–we are thankful that other families and individuals most likely will never be directly affected by this disorder. The extreme difficulty–because it is so rare, there is currently less than a handful of active studies on the disorder and little funding for research. Kleine-Levin Syndrome has come into our family’s life. Now that it is here, we are dedicated to helping our nephew and all people with KLS and their families.
How can we make a difference? How can we help? What can we do? We can work together to raise funds to support the medical researchers working to find a cure.
This year, 100% of all donations will go directly and immediately to fund Kleine-Levin Syndrome research being conducted by David Rye, MD, PhD, professor of neurology at Emory University’s School of Medicine and the director of research for Emory Healthcare’s Program in Sleep. Our goal is $10,000 and we have donated $5,000. We are hoping to raise an additional $5,000 with your help.
The Emory team led by Dr. Rye is actively involved in researching the cause and novel treatments for KLS and enhancing access for clinical care of patients suffering from KLS. Ongoing projects include: a) distinguishing a spinal fluid signature in protein patterns unique to KLS; b) participating with other research groups in collection of DNA in order to define genetic contributions to KLS; c) development of novel tools for diagnosis and assessment of treatment responses; d) sustaining a database that includes all of the above as well as skin derived stem cells; and e) being a referral source for clinical evaluation and care of KLS patients.
We hope that you will join us–either in person or on a “virtual mat”–for the 3rd annual Yoga in The Park with The YOGA Exchange of Holliston.
Practice yoga. Practice compassion. Together we can make a difference.
Thank you for your time, your kindness and your contributions! We are so grateful for your continued support!
Andrea & Daniela (aka Aunt A & Aunt D)