Hyper IgM Foundation wrote -
Support Idan’s Journey to a Cure by donating to the Hyper IgM Foundation
Three years ago when our baby boy Idan was diagnosed with Hyper IgM Syndrome (HIGM), a rare and life-threatening immune deficiency, an army of supporters came together to support Idan and our family as we headed into a bone marrow transplant to cure our little boy. Although the transplant was unsuccessful, something unique and special came out of that first battle: the Hyper IgM Foundation. As Amanda and I immersed ourselves in everything Hyper IgM in order to find a cure for Idan, we learned of the dire need for a community and voice for the Hyper IgM patients around the globe. HIGM is rare among an already rare family of genetic diseases categorized as primary immune deficiencies. The little information we could find tended to be outdated or inaccurate. We set out to not only fix this but to gather patients and families from around the world to create a stronger voice for Hyper IgM Syndrome patients in hopes that a combination of advocacy, education, and focused research will accelerate a cure and better outcomes for all families with Hyper IgM.
Three years later, we are going into battle again for our little boy, and behind us, we hope, stands the same army that helped us in our original fight. As we head back to Seattle for Idan’s 2nd transplant, we are calling on you to help not only us, but to help all children with Hyper IgM Syndrome. Idan is one of the lucky ones, he has several matched donor options for a transplant, but for many others transplant is not possible. And the cure itself comes with significant risks, with transplant complications taking the lives of two other little boys with Hyper IgM in the month of May alone. Our goal is to raise funds for research into gene therapy and other techniques that can provide curative options for all HIGM patients.
The Hyper IgM Foundation aims to improve outcomes and quality of life for Hyper IgM patients and their families through promoting and supporting research, creating and providing educational tools for the patient and physician communities, and creating a community to support Hyper IgM patients and their families as they undergo treatment and cope with this disease. Between Akiva’s extensive experience in public health, Amanda’s legal background in healthcare and nonprofit law, our fellow board member Dr. David Hagin’s cutting-edge research into gene editing for Hyper IgM, and our scientific advisory committee that consists of the foremost experts on Hyper IgM in the world, we are confident that we can make a tremendous impact.
We hope you can join us again in support for a cause that will impact the lives of many children and adults living with HIGM.
Consider a donation today!
For those of you interested in following Idan’s journey, we will be updating Idan’s blog and Facebook page on a regular basis. We are heading back to Seattle on June 19, and expect to be admitted to Seattle Children’s Hospital in July for 4-6 weeks. For the second time, we’re packing our bags and uprooting our lives. The decision to move forward with a second transplant was even more difficult than the first time, knowing what we do now about the risks of transplant, but we have to believe that Idan will be cured, and that he will have a brighter future.
The Hyper IgM Foundation is a recognized 501(c)(3) charity and all donations are tax deductible. We thank you for your support and invite you to stay up-to-date on the Foundation’s efforts by connecting with us on Facebook by liking the Hyper IgM Foundation Facebook page, www.FB.com/HyperIgMFoundation, and by visiting our website, www.hyperigm.org.
As a reminder, the Hyper IgM Foundation is entirely a volunteer run organization. We have no salaries, no rent and limited overhead. This means that 100% of your donation goes to fulfill our mission to improve the treatment, quality of life and the long term outlook for children and adults living with Hyper IGM Syndrome through research, support, education, and advocacy.