The Hyper IgM Foundation Blog
UPDATE ON THE HYPER IGM TRACK AT 2019 IDF NATIONAL CONFERENCE LAST WEEK
We had a great conference with 45 participants from the Hyper IgM Community. This was by far the largest in-person gathering of Hyper IgM patients in the world. We made a big splash at the IDF Conference, with 1300 attendees, our HIGM blue one-in-a-million shirts stood out and people kept asking us about Hyper IgM Syndrome!
For me, the best part of the conference was getting to meet and spending time with so many other Hyper IgM families. We all come from different backgrounds and different geographic locations, but in the end, we all face the same struggles with Hyper IgM and are part of the larger Hyper IgM family. As our new Foundation tag line states, “One in a million but not alone!” That was definitely the feeling I got spending time with all our families at the conference.
Besides the many Immunodeficiency talks the conference had to offer, and the HIGM Family Dinner the first night, we had 8 dedicated Hyper IgM track sessions that were planned by the Foundation:
- Transplant or No transplant? Is Hyper IgM “Tricky” to Transplant? by Dr. Troy Torgerson and Dr. Andrew Gennery.
- Are We Really Cured? Long-term Outcomes Post-Transplant by Dr. Andrew Gennery (we ran out of time for this one, and will host a webinar by Dr. Gennery in coming weeks).
- Overview of Clinical Aspects of Hyper IgM Syndrome by Dr. Antonio Condino-Neto (filling in for Hans Ohcs who had to cancel last minute).
- Living with Hyper IgM Syndrome: Therapeutic Options and Preventative Care by Dr. Antonio Condino-Neto.
- Gene Editing for X-Linked Hyper IgM by Dr. Caroline Kuo.
- Update on Research New Therapies: Interferon Gamma by Dr. Antonio Condino-Neto.
- Family Case presentations by Brianna Scozzaro and Karia Cooksey.
- Resources and Support Available to Hyper IgM Families by Akiva Zablocki.
- Are Carriers Really Unaffected? Observations in XHIGM Carrier Females by Troy Torgerson and Dr. Martin Evans.
The talks were informative and insightful and the discussions and back and forth between our families and the speakers were extremely productive. Once the IDF makes the recording of the sessions available I will post them to the group so that everyone can listen and follow the presentations on their own time.
Dr. Kuo gave a great update on gene editing for X-Linked Hyper IgM Syndrome, breaking down the science and struggles of bringing this new CRISPR technology for fixing the gene towards a real therapeutic option for our boys. One of her biggest challenges in the next few years is getting enough adult stem cell samples for her research (something the FDA gave feedback on in her pre-clinical discussions). The Hyper IgM Foundation is committed to helping Dr. Kuo with her research and has partnered with her to allocate funding to help her get the samples. The Foundation will pay for travel and lodging expenses for the adult patients to fly to UCLA and donate stem cells. If you or your family member is an adult XHIGM patient (not transplanted) you have a chance to really drive us all close to a cure by volunteering for her research. Please reach out to me.
While we all learned a lot and gained a better understanding of Hyper IgM, a repeated theme was that “we just don’t know much about . . . ” and our mission is to fix this! Some of the research we plan to partner on with these doctors is focused on better understanding Hyper IgM Syndrome, exploring issues with carriers and trying to understand the complexities that are involved with the longevity of XHIGM patients, despite being on immunoglobulin replacement therapy.
We are working with doctors in Seattle on several study ideas, including a XHIGM patients survey, a carrier study, and a newly conceived adult XHIGM study (literally in one of our session during the Q&A) to focus on trying to identify if there is any difference in genotype and phenotype or if is just lifestyle and luck on why some patients make it to adulthood and some do not. Setting up a study focused on XHIGM patients over 30 years old (stats say that only 20% make it that far).
We cannot do all this without all of your support and commitment to our community. Thank you for everyone that made it out to the conference and to those who have created a fundraiser to support the Foundation. If you want an easy way to show support as well as Hyper IgM pride, consider buying our new Hyper IgM Foundation’s t-shirts on sale now for the next three weeks: