Meet the PAC Members

Parent Advisory Committee

The ASF Parent Advisory Committee serves as a platform connecting the Angelman Syndrome Foundation to voices from the diverse members of the AS community.  The committee members are engaged representatives of their geographic region, and provide input on the workings and direction of the ASF.

The mission of the committee is to advise and share feedback to ensure the ASF is effectively addressing the needs of the Angelman community.

The volunteer committee meets 4 times a year and makes a committment to serve for two years.

Tim Bousum and his son Bode Tim Bousum Chair
Tim Bousum

Tim and his wife, Maiya Dos, are raising their boys, Cooper (14) and Bode (11, del +), in Ipswich, Ma. They first discovered the value of the ASF attending a family conference in 2011, and have been engaged ever since. They are passionate walk fundraisers and enjoy welcoming and networking with Angelman families.

Tim served on the ASF board of directors for 8 years, holding the positions of Secretary, Vice President, and ABOM representative during his tenure.

In his free time, Tim enjoys the beach and mountains, surfing and adaptive skiing with his family.

Jim Kubicza and family Jim & Jenn Kubicza Chair
Jim & Jenn Kubicza

Jim Kubicza and his wife, Jenn, have two children, Lincoln and Cole. Jim and Jenn immediately got involved in the AS community after Cole's diagnosis in 2012. They coordinate the ASF Walk in Cheshire, CT and fundraise for the ASF on a regular basis, as well as reach out to newly diagnosed families to offer support.

Jim has a degree in Business Management, works in sales at a local car dealership and also runs an online LEGO resale store. Jim likes music, working around the house and collecting LEGO. Jim served on the ASF Board of Directors and the board for the Connecticut Epilepsy walk. Jim currently sits on several committees within the ASF.

Jenn is a graduate of Quinnipiac University with a bachelors in Psychology and a minor in music. She works in insurance and enjoys taking road trips with the family, especially to Disney World and ASF conferences.

Courtney Swaford Courtney Swafford Secretary
Courtney Swafford

Courtney Swafford is the proud mother of two boys, Drew and Aaron, and wife of Joey. Aaron was diagnosed with the UPD sub-type of Angelman Syndrome in 2018 when he was 18 mos old, and Courtney has been passionate about inclusion and equitable access for all children since his diagnosis.
Courtney is an experienced business consultant and executive coach and also worked with the American Cancer Society in Atlanta for over five years. She holds an Industrial Engineering degree from Georgia Tech and currently lives just outside Atlanta in Avondale Estates, GA.

Stacey Davis and Family Stacey Davis
Stacey Davis

Stacey and her husband, Clay live in Brighton Colorado, just north of Denver. Their younger son Tyler, who is 21yrs old, was diagnosed with AS deletion when he was 16 months old. Clay III, their oldest son is 4 years older than Tyler. Having never heard of Angelman Syndrome when given the diagnosis they were grief stricken with the prognosis of what this syndrome meant. They dove in head first trying to learn everything about AS; the symptoms, treatments, and therapies. Before there was Facebook and social media they created a webpage ““ to bring AS awareness, document Tyler’s journey, and be a resource for AS families to reach out to.
Stacey has been active with the ASF and the AS community since Tyler's diagnosis and a contact for newly diagnosed families.

Stacey has been able to work from home and also be Tyler’s care provider. Stacey says, "as all of our angels, Tyler touches the heart of everyone he meets and makes a lasting impression!" From the beginning of their Angelman journey, Stacey has been a strong advocate for inclusion with Tyler's typical peers and he is an active part of his community. He was the varsity manager for softball, baseball, and girls basketball throughout his high school years and has continued after graduation. The Davis' have always encouraged Tyler to achieve as much as possible and to experience as many new activities and adventures as he can!

Karen Hill and Family Karen Hill
Karen Hill

Karen Hill and her husband, Todd are the proud parents of 12 year old Logan, who is diagnosed with Angelman syndrome, and his two brothers, 8 year old Zachary and 4 year old Arlo.

Karen graduated from the University of Surrey, UK and worked in mental health, rehabilitation and neuropsychology as a psychometrician for 15 years. She made the decision to stay home with her growing family 4 years ago. Karen and her family reside in Chicagoland where she is active in the local Angelman community and PTA of the school Logan attends. Karen is excited to be able to contribute to the ASF as part of the Parent Advisory Committee.

Morgan Leao and family Morgan Leao
Morgan Leao

Morgan is the proud mom to 2 littles with Angelman syndrome (mutation) Annabel and Bellamy. Morgan’s husband of 6 years, Walteir is from Brazil and inspired Morgan to learn his language. She now speaks English and Brazilian Portuguese.

The Leao family was introduced to Angelman syndrome when Annabel was 2.5 years old and Bellamy 6 months. Their diagnosis was an absolute shock. They dove head first by embracing this and becoming their voice. Not only did the Angelman Syndrome Foundation turn their world right side up with all the resources it offered us but so did all of the diagnosed families, they helped them feel less lost and more hopeful.

I always tell my children and people we meet that Angelman syndrome in no way defines them, they continue to beat the odds every day. Morgan is passionate about sharing her experiences and finding resources to help others on their journey.

Steven Mastrocola and family Steven Mastrocola
Steven Mastrocola

Steven is father to Mason (age 6, Del+), Gwendalyn and Wesley. Since Mason’s diagnosis, he has focused his personal time on advocating for Angelman syndrome awareness, navigating government and school resources and taking Mason to everything from aquatherapy to hippotherapy to figure out what best helps Mason learn and thrive. Steven, and his wife Krista are the coordinators of the ASF Walk in Westchester, NY, they regularly take Mason to the Angelman Clinic in Boston and have driven Mason up and down the east coast to participate in every Angelman research project they find. Steven works in NYC and currently resides in Westchester, NY.

Alyson Sinclair and family Alyson Sinclair
Alyson Sinclair

Alyson resides in the San Francisco Bay Area with her family that includes Talia, her 16 year old daughter, Noah, her 18 year old son with Angelman syndrome, David, her husband, and Bodie, her Chocolate Labrador Retriever.

Alyson is an attorney and since Noah was diagnosed with Angelman syndrome, she has used her legal background to advocate for Noah and for persons with disabilities. Alyson is a former Board Member of Support for Family of Children with Disabilities, a San Francisco non-profit that serves the needs of families with a family member with a disability or healthcare need. She currently serves as a Parent Mentor to the organization. Additionally, Alyson serves on the Self Determination Local Advisory Committee for Golden Gate Regional Center, a state and federally funded non-profit agency that provides services and supports to individuals with developmental disabilities in the San Francisco Bay Area.

Over the years, Alyson has been directly involved in local fundraisers in Northern California to support the ASF and also Alyson’s family/Team Noah has raised over $100,000 for the ASF. In her free time, Alyson enjoys running, hiking, enjoying the great outdoors and traveling.

Chelsea Smith and Family Chelsea Smith
Chelsea Smith

Chelsea Coffey Smith lives in Michigan with her husband, Joshua and sons, Tucker and Charlie. She began her journey with Angelman syndrome when Tucker was diagnosed, deletion positive in 2015.

Chelsea is a Navy Veteran and registered nurse with more than a decade experience in healthcare and patient advocacy including military medicine, emergency response, pediatric intensive care and utilization management. She is currently pursuing her Master of Science in Healthcare Delivery and Innovation to continue advocating for vulnerable populations. She enjoys connecting with new families and raising funds and awareness for Angelman syndrome with Tuck’s Army.

Nate Smith and family Nate Smith
Nate Smith

Nate Smith is a critical infrastructure project manager for an engineering and construction company. He lives in Sacramento, California with his wife Kaitlin, and their son Rowan, who is three years old and diagnosed with Angelman syndrome.

As a family, they like to go on walks around their neighborhood and enjoy meeting other AS families in the Northern California area. He is honored to have an opportunity to serve in this role and looks forward to working with the committee to help the Angelman Syndrome Foundation best serve the needs of the AS community.