Barbara Melamed Memorial Fund: A Commitment to Advancing SMS Research

Barbara Melamed Memorial Fund: A Commitment to Advancing SMS Research

The first person I called after receiving my daughter’s diagnosis of Smith-Magenis Syndrome (SMS) was my mother – the person I always called upon whenever anything significant occurred in my life.  I remember my exact words – simple – “Mom, it’s not good.  I am not even exaggerating. It’s not ok and it can never be fixed.”  She was silent as there was not much to say – sometimes silence is best after all I just needed her to listen. She came over that very night and stayed with us for a few days (she would always drop whatever she was doing if I needed her).  I could barely get out of bed but my mother rallied and spoke to my friends and told them the devastating news. Just recently my friend remembered that conversation with my mother and said, “Your mother was amazing on that call. She told me that it was a shocking diagnosis and that you couldn’t come to the phone but in time Jen will figure this out…she always does.”

From that day on my mother was in the trenches with me.  She spent every single weekend with us until she died. 

My mother’s unwavering support was no different when it came to the SMS Research Foundation (SMSRF). When I told her that Chris and I were co-founding a research organization to gain a better understanding of this poorly understood syndrome she rolled up her sleeves and jumped right in. My mother was well equipped to take on the challenge given her decades long experience working in the development office at the Horace Mann School.  She was uniquely qualified to fundraise and cultivate donor relationships.  From the very first day my mother helped me raise money and awareness for the SMSRF. She attended and helped to organize every fundraiser I hosted. She greeted donors with her big smile and endearing chatty personality. She was always able to articulate our mission and successes to inspire our donor base.

In the early grassroots phase of the organization when we were much smaller, I could always count on her to keep detailed spreadsheets on all our donors and she would personally reach out to so many of them to thank them for their support. She would send out all the acknowledgement letters and make sure they received all the appropriate documentation they needed for their records. Frequently I would get a call from her that would go like this, “Jen, I just tallied it all and can you believe we raised over $20k at the event.”   The SMSRF has been a huge source of pride for my mother and myself – it created another strong bond that held us close.

To honor her love and commitment to the organization and to help me keep her presence alive, I have created the Barbara Melamed Memorial Fund.  The fund will commit $10,000.00 annually to the SMSRF for the next 5 years. 

It is the perfect way to keep my mother close to me and continue her support to an organization that she helped to build. 

Jennifer Iannuzzi
Co-founder & President
SMS Research Foundation

Barbara’s warmth and compassion live on through the work we do. If you’d like to support SMS Research with a donation, we know Barbara would have appreciated that deeply.