Month: June 2017

Idan’s 1st Transplantversary

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It has been over four years since our son, Idan, was diagnosed with Hyper IgM Syndrome (HIGM), a rare and life-threatening immune deficiency, and 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 amazing and will be going to kindergarten this fall. In July, we will celebrate not only Idan’s fifth birthday but also his first 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 transplant outcomes or without having a donor match to even journey down the road for a cure. 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.

13697129_1332607503435880_8894533746877192939_nLast year Idan’s army helped raise over $19,000 in support of the Foundation and the research grants we provide. 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 One Year 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:

 

Other ways to support the cure:

Help us spread the word! Pass this email along, or share our Facebook fundraiser. Start a fundraising page through Crowdrise or Facebook and set your own goal in honor of Idan or another HIGM family.

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More about the Hyper IgM Foundation:

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!

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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.