It has been over five years since our son Idan, was diagnosed with Hyper IgM Syndrome (HIGM), a rare and life-threatening immune deficiency. An army of supporters came together to support our family as we headed into a bone marrow transplant to cure our little boy. Two transplants later and a long journey with many hospital stays, a cure appears to be within our reach.
Idan is doing amazingly well and just finished his first year in kindergarten. He is looking forward to 1st grade and enjoying many "firsts" this summer. First time walking barefoot in the grass. First time going on a bouncy house. First time running through a sprinkler in the playground. First time in a real summer camp, Camp Yomi, where he will take a bus out to real campgrounds, and have swimming twice a day. First time traveling to Israel and the first time meeting so many family members who live there. All of these are experiences we could never have imagined just a short while ago.
In July, we will celebrate not only Idan’s 6th birthday but also his second Transplant Anniversary, or “Transplantversary” - a great achievement for any transplant patient, but especially for Idan, given the failure of his first transplant.
Our journey is not over, but we rejoice and celebrate this milestone and give thanks to all of you who have walked this road with us. So many other children with Hyper IgM have been less fortunate, whether with respect to transplant outcomes, finding a donor match, or simply living with Hyper IgM. The Hyper IgM Foundation, which we founded, is working tirelessly to support these families and to help find a cure for all children and adults living with Hyper IgM Syndrome.
In the past two years, Idan’s army is responsible for raising over $34,000, which goes a long way in supporting the Foundation and the research grants we provide. Importantly, the Foundation is helping to fund cutting-edge gene editing research that will hopefully provide a safe and long-lasting cure for Hyper IgM Syndrome. Today, we ask you to help us bring this future closer and make a donation in honor of Idan’s 2nd Transplantversary.
Our goal is to raise over $25,000 this summer in honor of Idan’s cure and in support of the Hyper IgM Foundation. This will allow the Foundation to increase its research grants to the labs focused on gene therapy and accelerate a cure.Three ways you can donate:
- On the Crowdrise campaign page
- On the Facebook Fundraising page: https://www.facebook.com/donate/597716897289959/
- Directly on the Hyper IgM Website: www.hyperigm.org/donate
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 of a cause that will impact the lives of many children and adults living with HIGM.
Consider a donation today!-----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 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.