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.

It’s been a long and exhausting 5 years, but 2017 will go down in our family history as the year the tide changed. The year Idan’s immune system began to show its first signs of stabilizing. The year Idan was able to come out of isolation and even go to school. And now, the year that made Idan’s and our dream of growing our family a reality.

When Idan was first diagnosed with Hyper IgM, many of his doctors expressed relief that he was an only child because it reduced his exposure to germs, which, at the time, were a deadly threat. Worse yet, having another child in the future in and of itself appeared to be fraught with uncertainty. With Idan’s diagnosis came my own diagnosis. As a carrier of this dreadful disease, I learned that any child of mine has a 50% chance of inheriting Hyper IgM. This means that a baby boy would have a 50% chance of having the disease and requiring the same interventions that Idan went through. And a baby girl would have a 50% chance of being a carrier, which would mean she may eventually face the same realities as a mother that I do today. So for a period of time, we did not know if we would ever have another child. Thanks to the wonders of modern science and medicine, and a calm in the raging storm of illness and recovery, we have been blessed with a second little miracle – and can sleep well at night knowing that this baby will not have or be a carrier of Hyper IgM.

As we look forward to May of 2018, when we expect to welcome this new blessing into our lives, we wish you all a joyous and wonderful holiday season, and a very happy, healthy and meaningful New Year.

Twelve years ago today, I took a leap of faith into the abyss. Despite over 30 experts telling me that my brain tumor was “inoperable” and any surgeon that tries to remove it will most likely kill me, I decided to fly to Arizona and trust that Dr. Spetzler could save my life. Over the years I have always pondered how lucky I am to have lived. Truth is, it was not luck at all. I had spent months becoming an empowered patient while my tumor grew and pressed on the cranial nerves in my brainstem.  Together with my family and close friends, I contacted dozens of doctors and experts and read countless articles about brain tumors. I made an informed decision to ignore my NY medical team and trust a larger-than-life neurosurgeon in Arizona because I truly believed, after all our research, that he could do what he said he could do.

My journey then was mine alone. It is easier to make life-risking decisions like I needed to make when you are 25, single, and have no other choices. My family and friends were with me, but I set out on this journey on my own and my decisions only directly affected myself.

From the day I sat recovering in my hospital room, thinking about how I made my decision and was given a second chance at life, I knew that I would focus my life on helping others to become empowered patients. I truly believe that the communities I joined and the endless opinions I sought out allowed me to make and maximize the health care decisions I needed to make.

Amanda always tells me that I had my brain tumor experience as training for our son’s medical journey. In some ways, it is true. Unbeknownst to Amanda, she carried the CD40 Ligand Deficiency gene, and, regardless of who she married, her sons would have a 50-50 chance of being born with Hyper IgM Syndrome, a life-threatening and severe immune deficiency. In 2005, I lived, to find Amanda and fall in love, to be the father of Idan, to use my past experience in order to maximize our health care decisions to find him a cure. Call it fate, call it destiny, call it a series of unfortunate events, or, perhaps, call it the most fortunate of events. The journey I set in motion, the day I leaped off the cliff back on November 8th, 2005, led us to the point we are today.

Idan, our son, is doing great. The decisions Amanda and I made for him over the last four years have resulted in a true shot at a long and healthy life for our son – something we dared only dream about when he was first diagnosed. After learning all we could about Hyper IgM syndrome, we decided to travel across the country to Seattle in search of a cure for Idan. This time around we journeyed together, and our decisions were made for our son. We called upon a wide community of friends, family, and strangers, to help us along this journey with the hope to save our son. Inspired by Idan, and the amazing following his journey created, we spent the last four years working tirelessly to empower other patients and families to make the best decision they could when dealing with Hyper IgM Syndrome.

My work is far from being over. I may have been cured of my brain tumor, and Idan may be on his way to a cure from his Hyper IgM Syndrome, but so many others are in need of a cure. My wish is that you will help me continue the journey of patient empowerment.

On November 28th, Giving Tuesday, I will be calling again on all my friends to help us find a better cure for Hyper IgM Syndrome. Twelve years later my purpose is clearer than ever, and my journey is just beginning. Will you join me?