Month: July 2019

We are always amazed and overcome with joy to see how far you have come in three short years. Three years ago we sat with you in an isolated hospital room on the transplant floor of Seattle’s Children’s hospital and watched as your donor stem cells slowly transfused into your blood system. We hoped and prayed that these magical cells would find their way to your bone marrow and set up a permanent home there. For the second time in your short life, we put you through several months of hell, starting with a painful surgery to place a central line and a week of high dose chemotherapy and immune suppressants to make room in your bone marrow for those magical donors cells.

Three years later you are a tall strong boy who loves adventure and camp and is always up for the next challenge to overcome. You inspire us both and many many others you have never met. And your journey inspired a whole movement of Hyper IgM families whose legacy will be that someday we find a cure for this terrible disease that will not require the risk and challenges you went through. We love you Idan! Keep inspiring us every day!

Our goal is to raise $15,000 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.

Donate today and help us cure Hyper IgM Syndrome! 

 
You can donate on Idan’s campaign page on Network For Good or on Idan’s Facebook Fundraising page. 

Thank you for being part of Idan’s Army and helping us find a cure for Hyper IgM Syndrome!

Support Idan’s Journey to a Cure by donating to the Hyper IgM Foundation

Wow, we cannot believe it has already been six years since our son, Idan, was diagnosed with Hyper IgM Syndrome, a one-in-a-million, life-threatening immune deficiency. In a few weeks, Idan will be celebrating not only his 7th birthday but also his 3rd Transplant Anniversary, or  “Transplantversary” – a great achievement for any transplant patient, but especially for Idan, given the failure of his first transplant. This past year has been quite remarkable, with Idan finally meeting his donor, Alex, that saved his life!

It has been truly amazing to see these two get to know each other, and the way Idan’s face lights up every time we mention that we will be seeing Alex. While Idan has become an amazing big brother this year to his sister, Maya, he has gained a “blood” brother in Alex. Alex’s blood and immune system flows through Idan’s veins and has kept him strong and safe as he ventures through finishing 1st grade and going to day camp this summer. But while Idan had Alex to donate his life-saving stem cells, so many other patients with Hyper IgM Syndrome do not have this option. 

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 has raised over $40,000, 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 3rd Transplantversary.

Our goal is to raise $15,000 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.

Donate today and help us cure Hyper IgM Syndrome! 
You can donate on Idan’s campaign page on Network For Good or on Idan’s Facebook Fundraising page. 

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 making 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 through 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. 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.