The Hyper IgM Foundation Blog
USING FACEBOOK LIVE AS A TOOL TO CONNECT WITH EXPERTS ON HYPER IGM: UPDATE ON THE CIS ANNUAL MEETING
Last month, I had the honor of attending the Clinical Immunology Society’s Annual Meeting in Boston. I used the opportunity to continue to promote the Hyper IgM Foundation to physicians focused on treating Primary Immunodeficiencies (PID) and further our foundation’s core mission of advocacy for Hyper IgM families and patients. The meeting was attended by the top clinical immunologists in the world including all the members of our scientific advisory committee.
The attendees, a crowd of over 500 physicians, researchers and medical professionals from around the globe, were all focused on PID and Immune Dysregulation. There were a couple dozen sessions focused on everything from the relation of Emerging Infectious Diseases and PID to Measuring Quality, Patient-Centered Outcomes and Special Populations in Primary Immunodeficiencies. Of particular interest to us, was the session on Gene Therapy/Editing in which Seattle Children’s Hospital presented their work on Targeted gene editing for CD40L expression in X-HIGM T cells.
We also organized two unique live videos for our families and patients with two of the leading experts on Hyper IgM in the world. Thanks to the new Live Facebook feature launched earlier in the month, we were able to arrange live talks by Dr. Troy Torgerson from Seattle Children’s Hospital and Dr. Andrew Gennery from Great North Children’s Hospital in Newcastle, who spoke directly to our Hyper IgM support group, and took questions.
Dr. Torgerson gave an overview of the gene editing work Seattle is doing as well as where their work will be focused in the coming years. Dr. Gennery gave a talk on stem cell transplant outcomes for patients with Hyper IgM Syndrome, an area he researches and has published on. This was an amazing opportunity for our patients to hear directly from physicians who research and understand their experience, no matter where they might be located in the world.
To put this in perspective, during the days leading up to the meeting, our family support group added members from South Korea, Mexico, Colombia and more who joined over 125 others from around the world to have direct access to doctors from Seattle, WA and Newcastle, UK. Our families were able to hear directly from these doctors, who are actively working on curing Hyper IgM, something that would never have been possible without the foundation.
As we look forward to the second half of 2016 we have a lot more planned including a patient survey and more talks with physicians as well as continued content updates to our website. None of this would be possible without the generous support of our donors who allow us to expand our reach and mission to improve the treatment, quality of life and the long term outlook for children and adults living with Hyper IgM through research, support, education, and advocacy for families and patients.