About

Our Mission

The mission of the Angelman Syndrome Foundation is to advance the awareness and treatment of Angelman syndrome through education and information, research, and support for individuals with Angelman syndrome, their families and other concerned parties. We exist to give all of them a reason to smile, with the ultimate goal of finding a cure.

Diversity, Equity and Inclusion 

The Angelman Syndrome Foundation values diversity, equity and inclusion, recognizing the diverse backgrounds and circumstances of those affected by Angelman syndrome. We’re dedicated to creating a culture of respect, equal opportunities, and support for everyone to participate fully in our mission. We believe that diversity enriches our organization, and we’re committed to continuously educating ourselves and others, seeking out diverse perspectives and taking meaningful action to create a more equitable world.

Strategic Plan

The ASF Board of Directors has developed a strategic plan to help the ASF achieve its goals and objectives for the future. The ASF strategic plan is centered around three areas: Support for Angelman families and access to needed resources, Commitment to Research and Supporting the ASF AS Clinics. Focusing funding and energies in these 3 areas will not only improve the lives of those living with Angelman syndrome now and in the future.

Meet Our Staff

Amanda Moore Indianapolis, IN
Amanda Moore CEO

Amanda Moore became CEO of the the ASF in 2019. Prior to that, she was the Director of Leadership Development, Diversity and Inclusion and Global Strategies at the YMCA of Greater Indianapolis where she worked for over eighteen years. Amanda earned her Masters in Leadership Development as well as a Certificate in Fundraising from the Indiana University School of Philanthropy.

Amanda and her family live in Indianapolis, Indiana. Amanda’s husband, Adam, is a nurse and an amazing artist. In 2015 Amanda and Adam adopted twin boys, Jackson and Baden. Jackson was diagnosed with Angelman syndrome in January of 2017 and since then Amanda has made it her mission to be an advocate for all people with Angelman syndrome.

amoore@angelman.org

Eileen Braun Eileen Braun Manistee, MI
Eileen Braun Director of Operations

Eileen Braun is a graduate of Mayo School of Health Related Sciences, Rochester, MN. Prior to her career with ASF Eileen worked at the Mayo Clinic, University of Iowa Hospitals and Clinics, Bronson Methodist Hospital (Kalamazoo, MI) and Loyola University Medical Center. She began her fundraising career with ASF in 1998 and has worked for the ASF since 2001.

Eileen served as the Executive Director of the ASF for sixteen years before transitioning to the Director of Operations. She and her husband, Tom, have four children, the oldest, Kaitlin, has Angelman syndrome.

ebraun@angelman.org

Elizabeth Jalazo Elizabeth Jalazo, MD Chapel Hill, NC
Elizabeth Jalazo, MD Medical Officer

Elizabeth is a board certified pediatrician who served on the ASF Board of Directors before becoming Director of Clinical Integration for the ASF in 2019. Elizabeth and her husband Matt are parents to Evelyn, diagnosed with AS, and her siblings Sloane and Charlie.

Elizabeth and Matt became involved with the ASF in 2015 when Evelyn was diagnosed. They were the coordinators of the ASF Walk in Washington DC before moving to North Carolina.

CMO_15qNetwork@angelman.org

Katie Garbarini, MS, CGC Chapel Hill, NC
Katie Garbarini, MS, CGC Director of LADDER Learning Network

Katie is a licensed and certified genetic counselor who strives to improve access to medical care for people with genetic conditions. She has 7 years of experience in patient-facing roles in both industry (Invitae Laboratories) and university hospital settings (UNC Chapel Hill). Katie is best known for her positive attitude, enthusiasm, and passion for problem-solving. Katie is incredibly excited to lead the LADDER Learning Network and to support the Angelman syndrome and Dup15q communities. Lives in Chapel Hill, NC, with her husband and rescue English Setter dog.

KGarbarini@ladderlearningnetwork.org

Alisa Tammaro Norristown,PA
Alisa Tammaro Special Events Coordinator

Alisa has a wealth of experience in the non-profit sector as well as the hospitality industry. She comes to ASF with over 15 years of experience in planning and marketing of events. Her previous roles as the Family Engagement Officer and Community Event Coordinator at For Pete's Sake Cancer Respite Foundation, attention to detail, creativity, love of helping others and her commitment to building strong relationships will ensure she will treat ASF families, volunteers and donors with the utmost care.

Alisa loves to cook, bake, travel and spend time with family and friends. Living a happy and healthy lifestyle is an important part of her life. She enjoys long walks with her husband and various types of exercise. She is a mother of two adult children and enjoys getting to visit them as often as possible.

Julie Bondelli Julie Bondelli Carol Stream, IL
Julie Bondelli Data Entry/Administrative Assistant

Julie is responsible for maintaining the database through data management, analysis and reporting. She also handles requests for information and data from AS families and AS resources by answering phones and responding to issues that come her way. Julie comes to the ASF with over two decades of working in the non-profit sector. She has extensive experience in donor database management, in addition to a wide range of administrative and office support responsibilities. She lives in Carol Stream with her three daughters.

jbondelli@angelman.org

Caryn Kolodziej Caryn Kolodziej Plainfield, IL
Caryn Kolodziej Administrative Assistant

Caryn can be found at ASF taking care of donor acknowledgements, data entry and reports. In addition, Caryn is actively involved with ASF’s development efforts. Caryn comes to the Angelman Syndrome Foundation with over 8 years of experience in event planning, fundraising and database management with a children’s museum in Naperville, IL. Prior to working in the non-profit sector, Caryn worked for 17 years in the cable television industry as a Customer Service Manager, making her a perfect match for the ASF. Caryn and her husband have a son and daughter.

ckolodziej@angelman.org

Kathryn Ely, her husband Matt with children John Allen, Amelia and Stetson Kathryn Ely Canton, GA
Kathryn Ely Family Support Advocate

Kathryn and her husband, Matt, and live in metro Atlanta, GA. Their son, Stetson, was diagnosed with AS when he was 17 months old. After his diagnosis, the Ely's became heavily involved with ASF. They host a golf tournament, Stetson’s Chip Away @ AS, each year in honor of Stetson and coordinated the ASF Walk in Atlanta for four years. As a family they are committed to raising awareness of Angelman syndrome and funds for research. The Ely's have utilized the ASF AS clinics and ASF resources around the country from the clinics at Mass General, Vanderbilt, and UNC, along with visiting other specialists.
In July 2019, they welcomed Stetson’s brother, John Allen into the world and baby sister, Amelia in January 2021.

kely@angelman.org

Chloe Knouff Cumming, GA
Chloe Knouff Community Engagement Coordinator

Chloe Knouff has fundraising experience and a passion for nonprofits that began over a decade ago and has included work with Vanderbilt University Medical Center, Children’s Miracle Network, YMCA, Foundation for Angelman Syndrome Therapeutics, and most recently with an independent nonprofit consulting firm.

Notably, Chloe spent five years at Vanderbilt University Medical Center growing their community engagement and strategic marketing events. Her tenure included supporting their $40 million Children’s Hospital capital campaign. Within her consulting role, Chloe has supported multiple six and seven-figure campaigns with various nonprofits, including The Arc, Boys and Girls Club, Prevention of Blindness Society, and charter schools.

Chloe specializes in strategic planning, event management, community engagement, communications, and donor relations.

Chloe@angelman.org

Liz Thompson and Cami Liz Thompson Colorado Springs, CO
Liz Thompson Development and Grants

Liz is longtime nonprofit enthusiast, military spouse, and mother to 3 little girls including Cami, age 4, who lives with Angelman syndrome. With nearly 20 years in nonprofit and fundraising experience, Liz has served the roles of volunteer, program manager, area manager, development director, and executive director at a variety of nonprofits serving locally, regionally, and nationally. In 2019, Cami’s diagnosis quickly diverted Liz’s passions to supporting those with Angelman syndrome. Liz began raising awareness through The CAMI Project on Facebook and Instagram, became Colorado Springs’ ASF Walk Coordinator, and is now supporting ASF’s development efforts by assisting in creating development strategy, grant writing, donor relations, and more.


“Since receiving Cami’s diagnosis, I’ve been truly grateful and inspired by the care, compassion, and commitment within the Angelman syndrome community. I am thrilled to use my experience and skill set to help support all those effected by Angelman syndrome!”

Development@angelman.org

Amy Friel and family on the beach Amy Friel Orland Park, IL
Amy Friel Web and Marketing Communication

Amy Friel is a contractor, but still an integral part of the ASF and our team since 2014, managing and coordinating the ASF’s marketing communication activities, including our website, angelman.org. Amy’s focus is helping the ASF serve and communicate with the Angelman community through web, social media, e-newsletters and printed pieces.

Amy lives in a southwest suburb of Chicago with her husband and two daughters. In her free time, Amy enjoys photography, scrapbooking and traveling. Amy’s favorite part of working with the ASF is being inspired every day by its creative and tireless supporters and their work to spread awareness and make a difference in people’s lives.

webmaster@angelman.org

Leah Scott and Family Leah Scott Kansas City, KS
Leah Scott AS Clinics Support

Leah Scott is a talent acquisition specialist by day and a wrangler of semi-feral, free-range preschoolers by night. Her oldest child, Caden was adopted at birth and diagnosed with Angelman syndrome shortly after his second birthday. Since Caden’s diagnosis, Leah and her husband Bobby have fundraised for ASF, and Leah co-coordinated the 2022 ASF Walk in Olathe, KS.

Leah was blessed with a wicked sense of humor and cursed with insatiable wanderlust. Someday soon she’ll write a book about all the hilariously mortifying things that have happened to her over the years, which will cause readers to simultaneously crack up and melt into the floor from secondhand embarrassment. Leah and Bobby live in the Kansas City metro area with their sons Caden and Sawyer, and one particularly persnickety, geriatric dog, Gizmo.