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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.
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.
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.
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 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 two sons, Jude and Layne. 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.
Rachel Hibbard- 22q Moms' Retreat Committee Member-Rachel has been an Ambassador for the 22q Family Foundation since 2018. She is the author of the children's book Just Jen: Living With Invisible Differences, which was created to provide an all encompassing tool for teachers and parents to demonstrate compassion and acceptance to people with visible and invisible challenges, as well as to spread awareness of 22q. In her spare time, she makes classroom visits, speaks at various events and conferences, does freelance work, gives out hugs, and digs vanilla Chai. Rachel lives near Chicago, IL with her husband and 3 daughters, the youngest of which is rocking life with 22q11.2 Deletion Syndrome.
Rebecca White- 22q Moms' Retreat Committee Member-Rebecca is the proud mom of the strongest, sweetest and silliest little boy who happens to be diagnosed with 22q11.2 Deletion Syndrome. 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 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 graphic designer. She enjoys baking, reading, walks with her dog 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.
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.