Our Board

The tireless effort to “Make Rett History” starts with leadership from our board with valuable support from our committee members and volunteers.

Lawrence Fallon, PhD

Co-President
Larry Fallon and daughter Jordan

Current Role: Co-President

Board Member since: 2002

RS Angel: Jordan 

Profession: Engineer/Manager at BAE Systems; CEO/Founder at Sports Engineering

About Larry: Earning his PhD in Engineering, Larry has spent over three decades serving the National Interest in the defense industry.  With a passion for our National Pastime, Larry founded Sports Engineering consulting for MLB and sporting goods manufacturers.  He was key in establishing the Baseball Research Center at UMass-Lowell and developing the test equipment and procedures to make the game safer at the collegiate and youth level.  A lifetime of community involvement culminated with joining the Rett Syndrome Angels board to help families overcome the challenges of Rett Syndrome.  Larry is the proud father of daughters Jordan and Holly and sons Dylan and Brody.

Email Larry

Maggie Wurm

Co-President

Current Role: Co-President

Board Member since: 2017

RS Angel: Madasyn

Profession: Assistive Technologist/AAC Specialist and Co-Founder of AAC Voices

About Maggie: Proud mom to Madasyn and Korbin, her career has been driven by her daughter’s diagnosis’. Working in Early Intervention/ schools has guided her to always advocate on behalf of individuals with other abilities. This has led her to become the Assistive Technologist/AAC specialist that she is today. Four years at the Federation for Children with Special Needs, board of Commission of Disabilities and SEPAC chair, has allowed her to gain perspective on how to fully navigate and assist the community on a local and national level.  Maggie has founded sibling, parent support groups and ran successful AAC classes for individuals communicating with technology. Maggie joined Rett Syndrome Angels in hopes that her experience and heartache can shed some light on families also struggling with this disorder.

Email Maggie

Irene Gladstone

Board Secretary

Current Role: Secretary

Member since: 1991

RS Angel: Erika

Profession: Preschool Teacher

About Irene: Irene lives in Needham with her husband Gary. They have two adult children, Andrew and Erika. In 1989 Irene joined the organization that was then named the Rett Syndrome Education Center. She quickly felt “at home” when she met the other families. From that time on, Irene has been active in RSAM, hoping that just as her family found support when they so needed it, Rett Syndrome Angels can make the Rett journey less lonely and a bit easier for others. Irene has served as RSAM’s secretary continuously since 1991 and for several years also served as vice-president. She has been a member of various committees including chairperson of the Blue Sky Day Committee for most of its ten years. During the early years of the Boston Children’s Hospital Rett Program, she was chairperson of the program’s Parent Advisory Group. Professionally, Irene enjoyed thirty-five years interacting with young children as a preschool teacher.

Email Irene

Kathy Schoener

Board Treasurer

Current Role: Treasurer

Member since: 2000

RS Angel: Kelly

Profession: Initially holding a career in the computer engineering field, Kathy took time off to raise her family and now enjoys her role as a library assistant for her town.

About Kathy: Proud mom of three children – Benjamin, Kelly, and Christopher. Kathy began attending RSAM meetings when her daughter Kelly was initially diagnosed in 1996. Back then there was limited information on Rett and she found the support and encouragement of other parents invaluable. When the treasurer position opened up in 2002 she made the decision to get more involved and hasn’t looked back. She has managed the finances of the organization for the past two decades, along with serving on various committees over the years. She knows that this Rett journey can be extremely challenging at times and hopes that she can continue to provide assistance and hope to other families along the way. Kathy and her husband Tony live in Southborough. They have been actively involved in the science of Rett syndrome for the past 15 years, helping to fund research worldwide towards treatments and ultimately a cure for RS.

Michelle Boom

Board Member

Current Role: Board Member

Board Member since: 2020

RS Angel: Izzie

Profession: Former High School Science Teacher turned Chief Operating Officer of the Boom Household

About Michelle: Michelle is a committed and versatile mother of four energetic kiddos, Isabelle, Carter, Tyler, and Hudson. Pre-motherhood, she graduated from the University of Maine with a degree in Secondary Education and Life Sciences, with a concentration in Marine Sciences. After Isabelle’s diagnosis, Michelle elected to focus all her passion for pedagogy on an at-home developmental care approach with her children. Michelle is currently on the board of directors for Lamprey Health Care, the New Hampshire state representative for RettSyndrome.Org, and joined the Rett Syndrome Angels to continue to participate in, and advocate for, those beautiful girls and boys whom despite all challenges so unselfishly share the most contagious of smiles with the world.

Bonnie Budd

Board Member

Current Role: Board Member

Board Member since: 2020

RS Angel: Sabrina

Profession: Works for Hologic, a global leader in women’s health

About Bonnie: The proud mom of Richie, Sabrina, and Vincent. When not at work, Bonnie’s passion for disability awareness involves being an active volunteer in her community and beyond. She serves as chair of the Leominster Special Education Parent Advisory Council where she helps host workshops, support groups, and tirelessly advocates for special education programming. In the spring you will find Bonnie and Sabrina on the baseball field where Bonnie has served since 2011 as Sabrina’s baseball coach in the North Leominster Little League Challenger Baseball team. She coached Sabrina on the Rhythmic Gymnastics Team for the GLC Special Olympics program. Bonnie also enjoys a dare for charity. For the past 6 years, she has rappelled 22 stories off the Boston Hyatt to support Special Olympics programs. She jumped 40 feet into a stunt bag to raise awareness and research money for Rett Syndrome through the non-profit Girl Power 2 Cure. Each year she joins Team Girl Power 2 Cure in the Disney Princess Half Marathon Weekend where they raise money for Rett Syndrome Research and awareness as they volunteer at race events. She has hosted several events over the years including Comedy Shows and Zumba Dance-a-thons raising money for Rett Syndrome Research through her platform “ROAR – Rock Out Against Rett”. Bonnie joined Rett Syndrome Angels to help support families like hers by spreading awareness, supporting research, and letting families know that we are all in this journey together.

Ariane McMahn

Board Member

Current Role: Board Member

Board Member since: 2018

RS Angel: Keilly

About Ariane: Busy mom to Keilly, Keegan and Avery, Ariane has been actively involved in bringing awareness to Rett syndrome since her daughter Keilly was diagnosed in October of 2002. She continues to work tirelessly in fundraising efforts to support research toward treatments and potential cure for Rett syndrome. Ariane has been a family support representative for Rettsyndrome.org since 2004 helping to provide support to families of children with Rett syndrome in the CT, RI and MA areas. Ariane and her husband Christian helped to raise hundreds of thousands of dollars for Rett syndrome research through the Food and Wine Festival events which ran from 2000-2011. With the help of her other two children, Keegan and Avery McMahan, they together raised over $150,000 for Rett syndrome research by hosting a Lemonade STAND for Rett in the years including 2008-2016. Ariane eagerly joined Rett Syndrome Angels in the hopes of continuing to help provide support and resources to families in the New England area who also struggle everyday with Rett syndrome.

Laura Tempesta

Board Member

Board Member since: 2018

RS Angels: Ava and Juliana

About Laura: Laura has been involved with the organization since her twin daughters were diagnosed with Rett Syndrome in 2008.  Back then, an RSAM event with her husband Eric felt like date night!  In the years since, Laura, along with her son Peter and family has attended many RSAM events and raised money for research when possible.  Laura has found the connection with other families to be an invaluable and meaningful part of living life with Rett Syndrome especially in the darkest times and hopes that RSAM will continue to serve as a source of strength and inspiration for all. Trained as an occupational therapist, Laura spent many years at home holding down the fort and now works primarily with children in a nursery school classroom.

Email Laura

Jill Twigg

Board Member

Current Role: Board Member

Board Member since: 2021

RS Angel: Olivia (Livi) 

Profession: Ambassador for the Worcester Red Sox

About Jill: Proud mom of three (Olivia, Adam and Aiden), Jill became involved in the Rett community when her daughter was diagnosed at the age of 3. With experience in the entertainment industry and party planning, Jill chaired the very successful fundraiser Laughs for Livi to benefit IRSF. In later years, she joined with two other Rett families to expand on the fundraiser (Laughs for Livi/Bets for Bella/Tables for Tessa), and she helped raise a large sum of money for RSRT. In her free time, Jill is active as a youth and high school cheer coach, and her cheer teams attended multiple Blue Sky Days in Boston. Jill currently works as an Ambassador for the Worcester Red Sox, and she is hoping to bring her knowledge and excitement for event planning and fundraising to RSAM.

Tonya Chever

Board Member

Board Member since: 2023

RS Angels: Arrielle Smith

About Tonya: Tonya is a proud mother of two adult children Arrielle, age 30, and Jayvon, age 22. She feels fortunate her my journey to be surrounded by people whom she loves and cares for. She currently works for Hartford Healthcare as a clinician providing therapy to children with an emphasis on building the dyadic relationship between parents and children. There has been a journey in her life and as she continues to grow, she continues to learn ways to enhance Arrielle’s life as she is her underlying gatekeeper who projects nonverbal ways in which she can stay grounded. Her unconditional love for her child allows her the opportunity to assist families by being able to provide non-judgmental therapeutic care.

Email Tonya

Billy Johnson

Board Member

Current Role: Board Member

Board Member since: 2021 

RS Angel: Naomi

Profession: Medical Transport Driver

About Billy: There is nothing more dear to my heart than our girls and boys. My daughter Naomi is 21 and lots of fun.  I had to make a tuff decision on my career very early on with Naomi’s Rett diagnosis.  I became a small business owner in the transportation industry. I tow multi trucks at one point and specialize in the delivery of MRI, CT machines, x-ray rooms, catheterization labs and many other life saving machines for hospitals. I love doing fundraising events. I am known to be the pig roast guy at events.  My talented crews have raised over $100,000 for Rett syndrome and the My One Wish program (not make a wish ).  I am looking forward to serving our girls and boys and having a nice retirement in Orlando/Kissimmee in the near future. In the past I served on the board of Rett Syndrome Association of Massachusetts for 4 years. I’m happy to be back and enjoy planning and being apart of our family get togethers and supporting the mission of RS Angels.

Shanon Hilario

Board Member

Member since: 2023

RS Angel: Olivia

Profession: Teacher

About Shanon: Proudly calls her daughter Liv for short and says she is such a sweet little girl! Shanon is 28 years old and graduated from Westfield State with a bachelor’s in education, and she loves teaching! She is also a commissioned officer in the United States Army National Guard and loves going to the gym. Her hobbies include playing guitar, crafting different decor and baby shower items, as well as trying different activities. If she has any free time it’s usually spent with Liv who loves to watch Bluey, Moana, and dancing to Laurie Berkner.

 

Committee Members

Committee Members

Our committee members are previous board members or friends and family that dedicate themselves to a project they are passionate about. Often our members can help remotely, in person, or behind the scenes.

  • Dr. Michela Fagiolini
  • Anna Brodziak
  • Jane Joyce
    • RS Angels Connecticut Chapter
  • Jessica Irizarry-Pelletier
  • Elsie Alvarado
  • Andrea Val Zak

Sibling Volunteers

Sibling Volunteers

Our siblings bring a unique perspective to our group and are either scholarship recipients or have served on the board. Projects are created and carried out by their talents.

  • Caitlyn Wood
  • Sara and Michael Anastasia
  • Hannah Sweeney
  • Richie Budd
  • Nathan Fay
  • Emma Guernsey