Meet our Team
Dr. Andrew Levy
Born in New Haven, Connecticut. Graduated Yale University Summa Cum Laude Phi Beta Kappa in Molecular Biophysics and Biochemistry. Received full scholarship for medical school to Johns Hopkins where also received PhD in molecular genetics working with Noble Prize recipient Daniel Nathans. Completed internship and residency at Johns Hopkins Hospital and fellowship training at Harvard Medical School. Moved to Technion in Israel in 1997 and currently tenured Full Professor at Medical School where engaged in full time research leading post doc and graduate students to study IQSEC2 pathology and leading search for a way to improve the lives of IQSEC2 children.
Published over 200 peer reviewed manuscripts and has received over $30 million in peer reviewed grants from international organizations and author of over 30 issued patents.
Michele Mosa Patel
Michele Mosa Patel is proud mama to Rami and feels very lucky to have her husband and life partner, Mitul, by her side on this winding journey we call life.
Michele is passionate about exploring the space where technology meets humanity and inspiring others to realize that their voice matters.
As a Director at a large consumer electronics company, Michele has extensive experience in Strategy, Innovation, Technology, and Corporate Social Responsibility. She holds her MBA in Entrepreneurship & Innovation and Leadership & Change Management from NYU Stern.
Although Rami’s diagnosis was nothing short of devastating to Rami, Michele, Mitul, and their entire family she can often be overheard saying: ‘This IQSEC2 mutation is LEAST interesting thing about Rami. He is the sweetest, happiest, foodiest, loving, goofiest, most musical person I know.’
Through her work with this foundation, Michele hopes to give all people with IQSEC2 related disorders a voice, help provide support and solace to impacted families, and propel research forward to help all impacted to live fuller lives.
Todd’s greatest treasures are his wife, Sheri, daughter Savannah, and sons, Jax and Jaeger. His second child, Jaeger, was one of the first children to be officially diagnosed with the IQSEC2 gene mutation in 2014. Upon learning of the mutation, which wasn’t understood scientifically at the time, Todd promised his son that he’d find answers, create comfort, seek community, and pursue a cure. Todd’s mission is to uphold that promise not only for his son, but for all touched by the IQSEC2 mutation.
Zhanna is a mother to two children and one dog, a wife, a senior manager of Program Management at a software company, and a founder of the IQSEC2 Research & Advocacy Foundation.
Zhanna realized early on that her first-born child, Rachael, was not meeting her developmental milestones. Rachael was given many diagnoses over the years: PDD-NOS, Autism, Intellectual Disability, and Rett Syndrome. Rachael is a child with many labels – none of which fit her perfectly.
Finally, in 2015, after a full exome sequencing, Zhanna learned the root cause of Rachael’s issues. A mutation on the IQSEC2 gene. At that time, the genetics team at Massachusetts General Hospital had never heard of another person with an IQSEC2 mutation. There was no community – there was no information. At that point, Zhanna formed the IQSEC2 Mutation Facebook group which, over the course of the last several years, has grown from 1 member to almost 1,000 members. Zhanna was also a co-author of one of the earliest published papers on IQSEC2 mutations and continues to collaborate with key researchers in this area.
In addition to Rachael’s diagnoses, there are other labels that are more fitting: loving, enthusiastic, cuddly, adorable, and social. She loves people. She loves kids. She wants to be part of her world. There IS a child in there who currently can’t communicate but works so hard every day to get closer to being part of the world around her.
We don’t know where this unexpected journey will take us in the coming years. However, we do know that there is hope. Starting the IQSEC2 Research & Advocacy Foundation gives us hope that Rachael’s future, and that of so many boys and girls like her, is boundless.