Our Board of Directors

Lindsey Garcia - Executive Director - Lindsey became a member of the 22q community on the day of her 20 week ultrasound.  It was then that she discovered her son, Cohen, would be born with 22q11.2 Deletion Syndrome.  Rather than become bogged down by the diagnosis, Lindsey took the opportunity to educate herself about the syndrome as much as possible, and immediately connected with other members of the community.  She has been someone that other 22q parents turn to for support and advice, as well as a vocal advocate for 22q awareness.  

Lindsey received her Bachlor of Education from San Diego State University.  She has more than 8 years of primary grade teaching experience, and is well versed in Individualized Education Plans (or IEPs).  She has led more than a dozen students through IEPs and made accomodations to meet all of their learning needs.  She lives in the San Francisco Bay Area with her husband and two children, Isla and Cohen.  She is a foodie, obsessed with reading cookbooks, and has an unrivaled sweet tooth.  

Ryan Garcia - Director/Secretary - Since 2012, Ryan has made it his personal mission to use random acts of kindness to make the world a better place. After learning of his son Cohen's 22q11.2 Deletion Syndrome diagnosis in 2013, the mission focused on using the platform created by 366 Random Acts/State of Kind to raise awareness for 22q! Ryan has previously partnered with The Dempster Family Foundation on a number of fundraising and awareness events, and has been an active member of the 22q community.  

Ryan is a graduate of Indiana University, and has nearly 10 years of sales and sales management experience at startups and Fortune 500 companies. He recently moved with his wife and two children from Chicago to the Bay Area in California. Ryan's non-kindness/22q interests range from spending time with family to watching sports/WWE wrestling to laughing at internet memes.

Kapil Kumar-Vice President/Director-Kapil's son, Niam, has 22q11.2 Deletion Syndrome. Niam was diagnosed in utero following the 20 week ultrasound after doctors noted a heart abnormality. Since birth, Niam has bravely faced many procedures, checkups, and illnesses, including two open heart surgeries, four angioplasties, a g-tube, and ear tubes. Throughout Niam’s challenges and victories, Kapil has been one of his fiercest advocates and has begun focusing on finding more ways to provide a better life experience for kids suffering from diseases and disabilities.

Kapil is a serial board member. Aside from his involvement with The 22q Family Foundation, Kapil is a member the Family Advisory Board and the Surgical Experience Advisory Board at Ann & Robert H. Lurie Children’s Hospital of Chicago, a member of the Young Professionals Council at Access Living (a change agent committed to fostering an inclusive society that enables Chicagoans with disabilities to live fully–engaged and self–directed lives), and a ParentWISE (Wisdom In Shared Experience) volunteer at Lurie Children’s.

Kapil graduated from the University of Illinois at Urbana-Champaign with a B.S. in Finance, and is a Chartered Alternative Investment Analyst.  Kapil, his wife, and two kids live in Chicago. Kapil also works in Chicago and has 15+ years’ experience in investment research and management, real estate, change management, process improvement, and marketing.

Andrew DeStefano - Board Member - Andrew's son Mark was diagnosed with 22q deletion syndrome shortly after his birth in 2008. Since then, Mark has navigated a variety of medical and mental health challenges over the years. It was during Mark's grammar school years that Andrew, and his wife Crista, found Donna Cutler-Landsman, education consultant and expert on advocating for children with the syndrome. Andrew and his family have been committed to raising awareness for the community, including fundraising for the foundation's programming over the past several years. Andrew believes joining the 22q family foundation board is a great honor and an important platform to continue this mission.

Andrew graduated from St. John's University, Tobin School of Business, with a Master's in Business Administration, and a Bachelor of Arts, with a Major in Economics from SUNY Albany. Andrew has spent his nearly 30-year professional career on Wall Street working for various financial services firms. Andrew lives with his wife, Crista, sons John (19) and Mark (16), and dog Toby (3) in the suburbs of New York City.

Peter Mason-Board Member- Peter is an adult individual with 22q deletion syndrome who lives in Connecticut.  He is an artist, custom sneaker artist and collector, and a musician.  Peter has been drumming since he was three years old.  He shares his story with others in and out of the 22q community to help raise awareness for 22q.  He is looking forward to being a part of the 22q Family Foundation and helping to grow the 22q community.  Peter hopes to inspire others in the community in a positive light.

Amanda Goodwin-Board Member- Amanda and Kyle’s daughter Charlotte (8) was diagnosed with 22q Deletion Syndrome at 10 months of age.  Charlotte was born with both heart and kidney defects, and at 3 months of age Charlotte had open heart surgery.  She was also born with bilateral metatarsus adductus, requiring repair in 2021, and wears a back brace for scoliosis.  Charlotte is one of the strongest people I know, and is interesting, smart, and funny.  She faces all of her challenges with strength and bravery.

Amanda, Kyle, Charlotte, and Wesley (5) live in Naples, Florida with their two dogs, two cats, and many foster animals.  Wesley is truly the best brother to Charlotte.  He is kind, patient, compassionate, and a strong advocate for his sister.  As a family, Charlotte and Wesley enjoy going to the beach, visiting playgrounds, swimming, riding scooters, and building with Lego. 

Amanda has a background in education and spent five years as an elementary public school teacher before transitioning to working as a university professor.  Today, Amanda homeschools both Charlotte and Wesley.  Amanda has her BA in elementary education and English, an MS in educational technology, and an Ed.D. in instruction and administration with a focus on instructional design.

Our Consultants

Donna Cutler-Landsman -22q Educational Expert/Consultant - Donna leads the 22q Family Foundation Education Station.  She is the author of the definitive book about learning issues associated with 22q11.2 Deletion Syndrome (Educating Children with Velo-Cardio-Facial Syndrome (Also Known as 22q11.2 Deletion Syndrome and DiGeorge Syndrome).  Donna is an educator with over 35 years of classroom experience.  She has worked as both an advisor to gifted and talented students, as well as an advocate for children with learning challenges.  She has served as a cooperating teacher with the School of Education at the University of Wisconsin-Madison for 15 years as an educational consultant specializing in meeting the needs of children with VCFS/22q11.2 Deletion Syndrome.  

Shannon Myron-22q Educational Consultant - Shannon is delighted and honored to join the 22Q Family Foundation in the Education Station. She has spent her career helping students with unique needs in the public schools as a Nationally Certified School Psychologist. She received her bachelor's degree in psychology from the University of South Florida in 2008 and an Education Specialist degree in School Psychology from Auburn University in 2011. Shannon lives in sunny St. Petersburg, FL with her husband and two boys, one of whom was diagnosed with 22Q in 2019. They enjoy going to the beach and riding bikes around town as a family. Outside of family and work, Shannon loves to read, travel, listen to podcasts, and is a big fan of watching comedy. She's looking forward to meeting and helping families in our community. 

Jason Osborn - Career Coach - Jason is a volunteer Career Coach, leveraging his background in Human Resources and formal education, which includes a Masters degree in HR and a Professional in Human Resources (PHR) certification.

The Osborns have a son named Carter, and had a baby named Shanna born in 2016.  Shanna was born with 22q, and had open heart surgery when she was 7 days old.  Unfortunately, at around 3 months old, Shanna passed away due to heart failure.  Now Jason and Clarissa look to give back to the 22q community, and what better way than to help with Career Coaching.  Annually, they offer educational scholarships to those with 22q through a foundation they created in the name of Shanna.

In their free time, the Osborns like to travel, hike and explore the outdoors.  They have lived in Idaho, Nevada, Utah and North Carolina.  Clarissa and Jason enjoy running, and most recently, Jason started Spartan obstacle races.

Tammy Kleber- Career Coach- is a retired CPA who lives near Charlotte, North Carolina.  She has 5 grandchildren and was introduced to the world of 22q when her middle grandson was diagnosed at the age of two.  She found out about the 22q Family Foundation while searching online to learn more about her grandson’s condition. Tammy started working with the foundation as a volunteer Career Coach in 2024.  Through her years working as a CPA, she was involved with recruiting and staff training, so serving as a Career Coach seemed like a perfect fit.

Being retired has allowed Tammy to spend more time with her grandchildren. She volunteers as a Certified Administrative Official for USA swimming where she gets to watch her grandkids swim up close!  The four oldest all swim competitively with the youngest to be joining soon.

In addition to her 2 volunteer positions Tammy enjoys spending time with family, travel, cooking, flower gardening, tennis, and pickle ball.

Lisa Linder - Adult Benefits Consultant - Lisa is a Subject Matter Expert on Navigating Adult Benefits. She has an adult son with 22q whom she gives credit for all she knows about this subject. She has extensive experience working within the Intellectual and Developmental Disabilities (DD) community and Home and Community Based Services (HCBS) Medicaid waivers.  She worked as an HCBS waiver case manager for adults with IDD, taught parent-to-parent classes and chaired Parent Support groups.  She is passionate about educating families because she understands and honors the struggle they go through to make sure their adult children with disabilities are safe, healthy, and have the best life possible. 

Lisa graduated from Immaculata University with a Bachelor of Arts degree in Human Performance Management and is a member of the Alpha Sigma Lambda Honor Society.  Lisa is a Professional Certified Life Coach and Certified EFT Practitioner. 

Lisa currently works as a Certified CWIC (Community Work Incentive Coordinator) with Social Security's Work Incentive Planning and Assistance (WIPA) program.  She has won the APSE (Association of People Supporting Employment First) "Excellence in Benefits Counseling" award twice in the past 3 years for assisting individuals with understanding how working affects their benefits.  She is also a member of the Colorado Benefits Collaborative group where she mentors those who are newly certified. 

Lisa enjoys spending time with her family, playing games, riding bikes, and going to the beach.  

Our Intern

Gracie Chavez -22q Young Adult Support Intern- Gracie Chavez was introduced to  22q community when she was diagnosed  with 22q11.2 Deletion Syndrome at the age of two. Through out the years of never having any resources and not knowing anyone who could relate to her syndrome. So, after Gracie went to see a new geneticist with her mom. That's when they discovered a new name for VCF.

She educated herself about the syndrome.  She connected with other 22q members. Since then she knew she wanted to help and share awareness. She loves spending time with family, blogging, and is a floral desginer and loves doing weddings /special events.

Gracie lives in Elmore, Ohio with her Mom and Dad. She has one sister and three brothers.  Gracie is the youngest in her family and the only one with 22q. Gracie is always sharing awareness and constantly reaching out to young adults with 22q . Gracie is  always saying "This is my journey and I love it!" That way she can always remember she can do it and never give up!

Our 22q Retreat Planning Committee

Courtney Hayes- 22q Moms Retreat Founding Member- Courtney Hayes was introduced to the 22q world when her son, Jude, was born. The diagnosis has been a roller coaster for her, with many difficult days and many hopeful days spent leaning in to the 22q community. It was through this online community that the idea for the 22q Mom’s Retreat was born. Courtney realized how much hope and strength she drew when she was able to relate to other mothers with unique, yet similar, experiences to her own. Her friendship with Meagan Chisholm and how much it helped her on some of the more difficult days helped her dream of a place where moms could hug, laugh, cry, share some wine and share some hope. Courtney mentioned this idea to Meagan and the rest is history! She enjoys competing in triathlons, running, swimming, camping, and being outdoors. She is also currently working towards becoming a International Board Certified Lactation Consultant with the goal of opening up a private practice.  Courtney resides in Gilbert, Arizona with her husband Josh and her three sons, Jude, Layne, and Morrison. While she is still navigating the world of 22q, she is constantly growing, learning and figuring out how to be the best possible mother and advocate for Jude. 

Rebecca White - 22q Moms Retreat Committee Member - Rebecca is the proud mom of the strongest, sweetest and silliest little boy who was diagnosed with 22q11.2 Deletion Syndrome at birth. Rebecca attended the 2018 Moms' Retreat not knowing what to expect but ended up finding renewed hope, strength and a supportive community of moms who just understand what it is like to be a 22q mom. Ever since that retreat she has been an advocate for the The 22q Family Foundation and is honored to be a part of the Moms Retreat Committee. Rebecca is also the creator and host of the 22q podcast which was inspired after attending the 2021 Mom Restreat. Rebecca lives in Rhode Island with her husband and son. She is the program coordinator for a youth leadership and traffic safety prevention program, is a motivational speaker and a graphic designer. She enjoys baking, reading, walks with her dogs and her happy place is the beach.

Lindsay Head- 22q Moms Retreat Committee Member-Lindsay and her husband Adam were shocked at the news given to them during her 20 week ultrasound that their youngest son Lincoln, had Hypoplastic Left Heart Syndrome, among a few other anomalies.   This was the focus of their family until Lincoln's cardiologist finally convinced Lindsay to have genetic tests run due to Lincoln's CHD complexity.  Lincoln was given his 22q diagnosis at 14 months old, which is when Lindsay started to spend all of her free time researching and connecting to other families.  Lindsay met Megan Chisolm, and soon after several other families after attending the first 22q Moms Retreat. Lindsay spent several years in healthcare before Lincoln was born and is now the Co-Owner of Therapy Redefined in Carmel, Indiana.  Lindsay is passionate about educating other newly diagnosed 22q families about what private therapy should look like and helpful tips and tricks to help all of our 22qts reach their best potential.  Lindsay is married to Adam, who is a registered nurse at the Indianapolis VA hospital. They have 3 children Cadence (16), Cael (13), and Lincoln (7) who is their 22qt.  Lincoln is a social butterfly, he is thriving, and living his best life.

Eileen Nordmeyer-22q Moms Retreat Committee Member- After years of experiencing “ a lot of little things” with no real answer as to why, Eileen’s son Nate was finally diagnosed with 22 11.2 Deletion Syndrome at the age of 3 1/2.  At that time, Eileen felt fortunate to find resources, support, and community from the 22q Family Foundation, and through the years has taken advantage of all the services that the foundation has to offer. After attending the 22q Moms Retreats in 2018 and 2021,  Eileen experienced the profound power of connection with other moms in this community, and truly knew the value in being able to share, empathize with and learn from other moms.   Wanting to help others have the same experience, Eileen knew it was time to put her organizational strengths to work and join the retreat planning committee.  

Susan Busch-22q Moms Retreat Committee Member is a retired nurse practitioner and nurse practitioner instructor. She is the author of a book that tells the story of raising her son Mikey with 22q, entitled Yearning for Normal. The book addresses many of the questions, anxieties, sorrows, and uncertainties encountered in being a 22q mom. Mikey died unexpectedly last summer at age 38 after a freak accident. Even though he’s gone, she remains a 22q mom with experience (old). She maintains that having a 22q child is an unexpected life curriculum for learning love, kindness, and acceptance of life’s losses and imperfections. Susan learned how to thrive during the years of raising Mikey through prayer, meditation, and journaling. It is her desire to pass on those skills to other 22q moms. She lives in Peninsula Ohio and delights in three grandchildren so far.