Month: September 2015

Our latest email update

Columbia IdanHi everyone,

 It’s been too long since the last time we sent an email out to Idan’s Army.  Hopefully you’ve been following the blog updates on IdanMyHero.com, latest news, and our Facebook page, Help Fight for Idan.  Regardless, we wanted to check in, give you the latest update and plans for the coming years, and introduce you to Hyper IgM Foundation, Inc., which we recently formed to help others like Idan.

First and foremost, Idan turned 3 on July 20th and is doing very well for a child with Hyper IgM Syndrome. As you may know, Idan’s first bone marrow transplant (BMT) failed, and we have been mourning the loss of his donor’s graft over the last year. The good news, however, is that Idan is a strong and vibrant little man, and his doctors say he is physically ready for another transplant once we give them the go-ahead. Emotionally, it is hard to believe that the three of us will ever be ready to go through that long ordeal again, but the fact that we are familiar with the process will hopefully help us get through the next BMT. In the meantime, we are working with the doctors to coordinate timing – be it this year or next, Idan’s chances of surviving and being cured are significantly higher if the transplant happens before the age of 5.

Idan remains in moderate isolation (which will intensify during flu season, which starts this month, believe it or not).  He has permission to see healthy kids and adults and the ability go on some “adventures” from time to time. He has been tolerating his weekly subcutaneous IgG replacement therapy infusions extraordinarily well, and, true to form, he has thrived, and is a remarkably smart and happy child. Since he cannot attend pre-school he will start receiving home-school services this September. Idan is very excited to start “school” and is eager to learn and advance.

Our lives too have been changed by transplant and we have spent much of our time over the past two years becoming empowered patients and advocates for Hyper IgM and Immune Deficiencies within the medical community. Amanda’s experience has led her to focus her legal career on healthcare and nonprofit law, transitioning out of litigation and into the healthcare practice at her firm Sheppard Mullin Richter & Hamilton LLP.

The knowledge we have gained and the connections we have made in the medical world and among the global Hyper IgM community have inspired us to form a not-for-profit corporation called Hyper IgM Foundation, Inc. Our mission is to improve the treatment, quality of life and the long-term outlook for children and adults living with Hyper IgM through research, support, education, and advocacy.  We are in touch with some of the leading labs across the country that are on the forefront of gene editing for those genetic mutations that cause Hyper IgM and are seeing some early but very promising results. Much of our focus, therefore, will be to support and advocate for research that will further advance these exciting new developments as they hold the promise of a cure for children like Idan without many of the attendant complications of the bone marrow transplant.

In addition, our journey has introduced us to dozens of other families living with Hyper IgM, and parents of children just like Idan, discovering this life-threatening disease much like we did – standing by their child’s ventilator in an ICU – who have found our blog and seek our advice.  All the research, consultations, and connections we’ve made since Idan was diagnosed are now parlaying into a wealth of knowledge and expertise that we can use to help support and educate these families and their doctors as they navigate the quagmire that is Hyper IgM. In that regard, we have established a scientific advisory board that is going to help guide us in developing best practices, treatment plans, and resources for the relevant patient and medical communities.

We invite you to visit the Hyper IgM Foundation’s website, and encourage you to share our story and vision, spread the word and help more children like Idan.

All our best, and, as always, thank you for being part of Idan’s Army.

Akiva & Amanda and Idan

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