Staff
Angela Weaver
Executive Director
Angela is an experienced Executive Director, but foremost she is a parent to a child born with a rare disease. Having a child with a rare disease made Angela a passionate advocate. Her daughter inspired her to make the world a better place. Angela is incredibly proud of working closely with regional and state legislators to change two state laws in Minnesota for patients to have better access to medical treatments. Realizing the impact of sharing her family’s story, Angela was often a guest speaker for the FamilieScn2a Foundation, the Epilepsy Foundation, and several other organizations working to address challenges children with rare diseases face. Angela has spent nearly two decades fighting for a cure for her daughter’s rare disease by spreading awareness, participating in research studies, having fundraisers, and encouraging her Scn2a Community to Fight On. In 2018, after a lifelong battle with Scn2a Angela’s daughter Amelia passed away at age 12. Angela and her family made the brave decision to donate Amelia’s organs and tissue, so even now Amelia is fighting on for a cure. In 2019, at the FamilieScn2a Conference Angela spoke on why research is vital to a cure. In 2021, Angela shared Amelia’s story in a patient-led listening session with the FDA. In 2022, Angela partnered with rare foundations, world renowned researchers, and the Director from the Harvard Brain Bank to share information, resources, and experiences on brain donation and the impact on the rare community. In Amelia’s memory Angela continues to share Amelia’s story. In 2023, Angela accepted the role of Executive Director for the SMS Research Foundation.
Angela is honored to share her skills, knowledge, and experience to support those in the SMS community, and grow the impact of the SMS Research Foundation. Angela brings nearly 20 years’ experience in the rare disease and nonprofit community, on both a professional and personal level. Prior to her new role, Angela served as the Executive Director of a nonprofit focused on funding student scholarships and programs where her work focused on fund development, grant writing, and strategic operations. Angela resides in Northern Minnesota with her husband Joshua, and their youngest daughter Penelope.
Erin Andrews
Administrative Coordinator
Erin joined the SMS Research Foundation in 2024. With a background in development for non-profits and higher education institutions, Erin also brings her expertise in the arts to contribute to the SMSRF’s marketing efforts. She holds a MFA in Comics, blending her passion for written and visual storytelling with her professional experience.
Erin has two nieces living with a rare disease, and wants to use her time and skills to make a meaningful impact for families in similar situations. She lives in Knoxville, Tennessee with her family.
Board Members
Jennifer M. Iannuzzi
President
Jennifer M. Iannuzzi is the co-founder and president of the SMS Research Foundation. Her daughter Sydney was diagnosed with SMS in 2007 at age 2 when she was found to have global developmental delays. She noted a paucity in the amount of clinical research being performed for SMS and felt that an organization was needed whose sole purpose was to further the progress in SMS.
Jennifer attended Clark University in Worcester, MA. She completed her masters in social work at NYU in 1993 and began working at the Staten Island Mental Health Society. She provided therapy to children and their families. She then worked at a day treatment facility in Westchester, NY. This population better suited her interests as these children had more intense special needs. Jennifer spent the next four years working with a multidisciplinary team to provide individual, group, and family therapy. She left in 2001 after the birth of her first child to devote her time to being a full-time mother.
Jennifer is passionate about re-defining what it means to be a parent of a special needs child. She is an active blogger on her Living Special Needs site and has written nearly a dozen blogs with brutal honesty and insight sharing her unique perspective with the community. One of her blogs “My days of counting are numbered” was published in the Journal of Genetic Counseling in July 2012.
Jennifer is currently a licensed Clinical Social worker in the State of Connecticut and currently has her own private practice that specializes in working with families Living Special Needs.
Jennifer resides in Wilton, CT with her husband, Chris and three children: Ben, Cole, and Sydney.
Jonathan Miller
Vice President
Jonathan Miller is the Managing Partner at Nye, Stirling, Hale & Miller, LLP, where he specializes in handling complex civil litigation. Jonathan has represented Fortune 500 companies, public entities, universities, and individuals in cases involving higher education law, civil rights, wrongful termination, consumer class actions, unfair business practices, catastrophic personal injury, and copyright, trademark and patent infringement.
Jonathan has served as lead trial and appellate counsel in numerous cases in state and federal courts across the country, where he has secured both multi-million-dollar plaintiff awards and defense verdicts for his individual and institutional clients. He has also served as Lead Counsel in multiple state and nationwide class action cases. Jonathan’s trial and appellate experience allows him to obtain creative, effective, and efficient resolutions for many of his clients short of having to expend such efforts.
Jonathan enjoys an AV® Preeminent™ rating from Martindale-Hubbell, the highest rating given practicing attorneys by their peers in terms of both professional competence and ethics.
Jonathan is a graduate of The Pennsylvania State University, where he received his undergraduate and law degrees. He volunteers his time with several non-profit organizations, including serving as a Board member on the Smith-Magenis Syndrome Research Foundation (“SMSRF”). Jonathan has also previously served as the Chair of the Santa Barbara Region Chamber of Commerce, and as an adjunct professor at the Santa Barbara College of Law teaching Intellectual Property.
Jérémie Hains-Pouliot
Secretary
Jérémie began his involvement with the SMS Research Foundation in 2022. He is a strategic advisor on pay equity for a provincial government organism in Canada. He attended Laval University and completed a bachelor’s and a master’s degree in industrial relations in 2012.
Jérémie lives in Quebec, Canada, with his partner Mélanie and their two children, Hubert (4) and Olivia (2). When Hubert was diagnosed with SMS in 2022 at the age of 2, his priority became to help his son and to contribute to the advancement of research.
Noticing that there was very little awareness and funding in Canada, he then found the SMS Research Foundation and decided to get involved. Jérémie says he wants to be involved with the SMRF to have the opportunity to be a part of the work that brings hope to families like his.
Steven Tanenbaum
Treasurer
Steven Tanenbaum is the Global CFO of OpenX, a business unit of WPP – the British multinational communications, advertising, public relations, technology and commerce holding company. Steven is responsible for the global financial, commercial, and contractual relationship between WPP and the Coca-Cola Company. Steven previously held a similar position at WPP, for all Colgate-Palmolive brands globally. Steven is a Certified Public Accountant, with extensive experience in both external and internal audit.
Steven lives in New Jersey with his two children, Logan and Marni. Marni was diagnosed with SMS in 2021 at the age of 4. While receiving the SMS diagnosis was difficult, Steven prefers to take action to help Marni and all individuals with SMS. Steven is extremely excited about joining the SMSRF Board and looking forward to all of the advancements the SMSRF will make for the SMS community.
Michael Kingston
Research Committee
Michael Kingston is a Managing Director at Lazard, where he advises pharmaceutical, biotech, diagnostic and life science tool companies on corporate finance matters. Previously he led clinical trials across a number of different therapeutic areas and phases of development. Michael holds an honors bachelor’s degree in biochemistry from the University of Western Ontario and an MBA from the Haas School of Business at the University of California Berkeley.
Michael lives in San Francisco with his wife Courtney, and their sons Ben and Matthew. Ben was diagnosed with SMS in 2017 at age 7. While the SMS diagnosis was difficult, it also provided the answer that Michael and Courtney had been searching for and gave more direction to their plan of care for Ben. Michael is thrilled to be a member of the SMSRF Board and to help advance SMS research.
Jennifer Sauer
Development Committee
Jennifer is a board member and focuses on fundraising for the SMSRF. Jennifer earned her BA in Business Management from Texas State University in 2008. She has been a project assistant at D.E. Harvey Builders for the past 8 years.
Jennifer met her husband, Brian, at TXST and they were married in 2012. They have two children, Abigail (7) and Aaron (3). Aaron was diagnosed at 17 months with SMS. After watching the “Understanding Smith-Magenis Syndrome: SMS Research Foundation” video, Jennifer and Brian knew they wanted to support the SMSRF in every way they could.
Jennifer is excited to join the board and help raise awareness through fundraising. She is confident that by funding research we can work together to create treatments and therapies to improve the lives of those with SMS and possibly others with genetic disorders. She is passionate about her family and hopes to provide her children with the brightest future possible.
Check Back Soon for Our New Board Member’s Bio
Scientific Advisory Panel
For information about our Scientific Advisory Panel, please click here.
Founders
Jennifer M. Iannuzzi
See bio above.
Missy Longman
Missy is Co-Founder of the SMS Research Foundation. Her daughter, Sienna was diagnosed with Smith-Magenis Syndrome shortly after having open heart surgery at just four weeks old. Missy became an avid fundraiser for the rare syndrome in 2009 when she realized that there was no funding specifically for SMS research and helped launched the organization after her first event. Missy is extremely active in the special needs community. In addition to Sienna, Missy has two boys, Sean and Ben with husband Dan, who served on the board of the SMSRF as treasurer.
