Need advice? Looking for Angelman families that live near you? Have a frustration or celebration that only another AS parent would understand?
Making connections with others in the Angelman community can be very powerful and the ASF Family Champions are available for all of these reasons and more! These fellow AS family members have volunteered to be available to other families to share their knowledge, experience and lend an ear. Get in touch and make a new connection today!
Interested in becoming an ASF Family Champion? Contact Kathryn Ely at kely@angelman.org.
Adult Champions
For families of adults with AS.
International Champions
For families in international locations.
Adult Housing Champions
Caregivers who have navigated residential options.
Arizona
Martha Estrada
I have a 20 year old son with AS and a 29 year old daughter. I hosted the very first ASF Walk in Las Vegas and did so for several years. When my son was diagnosed and exited early intervention, I became a parent professional and started working in early intervention or therapy center. I graduated from Parent in Policymaking and have also been involved in the disability community as an advocate or in the nonprofit sector.
Location: Chandler,
Arizona
Contact:
Languages: English, Spanish
California
Alyson Sinclair
Alyson resides in the San Francisco Bay Area. Her son, Noah, is 21 years old and has Angelman syndrome. 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. In her free time, Alyson enjoys running, hiking, enjoying the great outdoors and traveling.
Location: Mill Valley,
California
Contact:
Hilda Tourians
My son is 32 and he has been a central part of my life even though he doesn't live me. I don't have any other children and will be happy to connect other parents who are interested in learning about how to survive divorce.
Location: Long Beach,
California
Contact:
Languages: English, Armenian, Farsi
Nate Smith
Nate lives in Sacramento with his wife, Kaitlin, and their son Rowan. They enjoy being a part of the AS Community and making connections with other families in the area. Nate also sits on the Parent Advisory Committee for the ASF.
Location: Sacramento,
California
Contact:
Colorado
Courtney Gray
Mama to 3, business owner, special needs substitute teacher, and lover of sunshine!
Location: Parker,
Colorado
Contact:
Morgan Leao
I'm Morgan, mama to two with AS. My husband Walteir, I and the kiddos live in the colorful state of Colorado. We are their caregivers and are able to dedicate all of our time to them. Through the highs and lows of parenting, we embody resilience, compassion, and unwavering love. Our home in Colorado serves as a haven where Annabel and Bellamy are cherished, supported, and encouraged to thrive despite the challenges they face. I am always open to chat all things AS and more. We hope to be able to share our inspiring journey as we navigate the beautiful complexities of parenting children with Angelman syndrome, offering insights, support, and a beacon of hope for families on similar paths.
Location: Castle Rock,
Colorado
Contact:
Languages: English, Portuguese
Stacey Davis
I am the mom of Tyler who is 23 yrs ( Del + ) who was diagnosed at 16 mos. We live in Colorado with his dad Clay. His older brother, Clay III lives close by with his wife and two daughters. Tyler has been on a restricted diet since before the age of 3 yrs beginning with the Ketogenic diet and transitioning to a low carb diet which he is still on today. I have had the privilege to be able to work from home and also be Tyler's care provider. As all of our "angels", Tyler touches the heart of everyone he meets and makes a lasting impression!
From the beginning, I have advocated for inclusion with Tyler's typical peers and he is an active part of his community! He has been the Varsity Softball and Baseball manager throughout his entire high school years and has continued after he graduated. We have and continue to pushed Tyler to achieve as much as possible and to experience as many new activities and adventures as he can! Being a mom of an older angel and seeing how WRONG the prognosis for Tyler's quality of life was that we were given at his diagnosis, makes me so very passionate about sharing our journey and the amazing potential our angels have.
Please feel free to reach out to me with any questions, as a sounding board, or if you just need a friendly ear from someone who understands your challenges!
Location: Brighton,
Colorado
Contact:
Georgia
Kathryn Ely
My husband, Matt, and I live in Canton, Ga just north of Atlanta. Our 6 year old son, Stetson, was diagnosed with AS when he was 17 months old. His diagnosis was a shock to us. We had never heard of Angelman syndrome and were not quite sure where to turn. But we embraced it and started to reach out to any specialists we could find with the help of the ASF Clinic Network. We have been to Vanderbilt, UNC, University of Florida, Mass General and the Genetics Center in Greenwood, South Carolina. We consider ASF our life-line during this journey. Stetson is in kindergarten and absolutely loves school. We also just had another baby boy, John Allen, in July 2019.
Location: Canton,
Georgia
Contact:
Nicole Perrotte
Dr. Nicole Perrotte is a Board Certified Internal Medicine Physician. As a physician and mother, she understands the frustration and the struggle to make things work for your child as he/she is different and do not fit into the regular mold of the world. She has learned how to advocate through her speaking, coaching and every day interactions with others. She has been featured in Forbes magazine and TEDx discussing work culture, wellness and mental health advocacy. In her free time, she enjoys being outdoors in nature, photography, traveling with her Angel and her family.
Location: Duluth,
Georgia
Contact:
Illinois
Eric and Courtney Castelli
Eric and Courtney live in the St. Louis metro area with their three children: twins Lucy (del +) and Lauren along with son Colin. Courtney is a public school administrator and Eric is CEO of a local marketing firm. We have been an Angelman syndrome family since 2008 when Lucy was diagnosed just before her first birthday. They have navigated early intervention programs, insurance, seizures, scoliosis, behaviors, AAC, IEP development, and the day to day life of caring for a child with AS.
Location: Columbia,
Illinois
Contact:
Karen Hill
Karen Hill and her husband, Todd are the proud parents of 14 year old Logan, who is diagnosed with Angelman syndrome, and his two brothers, 10 year old Zachary and 6 year old Arlo. After Logan's diagnosis Karen became especially passionate about learning about AAC to help Logan on his communication path. She also serves on the ASFs Parent Advisory Committee.
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 6 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. She enjoys meeting new Angelman families and looks forward to helping families connect through the Family Champion Program.
Location: Arlington Heights,
Illinois
Contact:
Katie Weber
Katie lives in Yorkville, IL, a suburb of Chicago, with her husband Greg and children: Cameron (del+), Zach, and stepson Ashe. Katie works in Public Health as an Emergency Planner and Greg works for a Sanitary District. Cameron was diagnosed in 2019 at 15 months just before Zach was born. Zach has been diagnosed with high functioning Autism and ADHD and Ashe is along for our crazy ride. Between the younger two we have experienced so much therapy, worked through two varying IEPs with the school system, navigated the ins and outs of insurance all while combating the day to day activities and behaviors.
We tend to push through life with the use of humor and positivity. A nice glass of wine doesn't hurt either. If we can't laugh about situations we find ourselves in, then we would drown. I love connecting with other families to share experiences and get new ideas. No one will ever truly understand this life except for fellow parents running the same marathon as yourself.
Location: Yorkville,
Illinois
Contact:
Indiana
Vicki Nelson
Vicki is mother to Amanda Moore, the ASF CEO and grandmother to Baden and Jackson Moore - Jackson is diagnosed with Angelman syndrome. After Jackson's diagnosis, Vicki started started Jackson & Baden's Soap for Hope and donates a portion of proceeds to the Angelman Syndrome Foundation.
Location: Indianapolis,
Indiana
Contact:
Massachusetts
Michael Cecere
Mike Cecere and his wife Lori-an work in the Finance Industry for The Bank of New York Mellon and State Street Corporation respectively. They reside in Kingston, Massachusetts with their 3 children, Michael, Weston, who was diagnosed with Angelman Syndrome in 2014, and Scarlett. Mike is active in both the local community and Angelman community. He is the Plymouth Angelman Strong coordinator.
Location: Kingston,
Massachusetts
Contact:
Minnesota
Curtis Hanson
Both of our daughters, Kaia & Emma, are diagnosed with Angelman syndrome UBE3A mutation. We live in Excelsior, MN. Angelman is a rare disease, but it doesn't feel like it when you realize all of the families who are impacted in your state and begin to connect with them and reach out to each other for support. None of us is alone in Angelman. Through social media we connect with each other to share the ups and downs and get advice. We are on this journey together as a community and we care deeply about each other's loved ones impacted by AS. We work every day to make sure that the therapeutics currently in clinical trial stay on track, move as quickly as possible through regulatory approvals and into the clinic, so that our children can begin to produce this essential protein in their nervous system, UBE3A.
Location: Excelsior,
Minnesota
Contact:
Dawn Bly
My husband, Russell, and I live in Northwestern Minnesota. Our youngest son David, was diagnosed with AS in 1997 when he was 17 months old. His diagnosis caught us off guard. Angelman syndrome was unfamiliar to us, and we were unsure of where to look for more information. With the assistance of the Angelman Syndrome Foundation, we began to connect and bridge the necessary resources for David and the rest of our family. Because it was so helpful to us, I have committed my life to helping others connect.
I'm here to help as an ASF Family Champion, offering information, a listening ear, or assistance in realizing the potential of your angel. Every child has the right to "belong," and they should be able to participate in life to reach their potential. I am passionate about helping others find ways to live, work, and play in their environments.
Location: Fosston,
Minnesota
Contact:
Mindy McBride
Mindy and her husband, Andy reside in the southern suburbs of Minneapolis/St. Paul metro area with their two children. Maisie was diagnosed with Angelman Syndrome (mutation) in 2011 at 20 months old, and has a little sister Elsa that advocates and supports her.
Mindy is a principal in St. Paul Public Schools and has been in education and advocacy for over 20 years. Mindy is active in her community as she serves as treasurer for the St. Paul Principal Association, the Rosemount Fastpitch board, Angelman Syndrome Foundation board, and the Equity Advisory Council in district 196.
Mindy and Andy have been involved in Angelman syndrome fundraising for a cure since 2011. Andy and Mindy are also advocates in the West Nile Virus community after it directly impacted Andy in 2018 and changed their lives forever.
Location: Rosemount,
Minnesota
Contact:
Mississippi
Robin Wilkerson
My husband, Woody, and I have a daughter, Paige, who has Angelman syndrome. She is 31 years old and has the UPD transmission of Angelman syndrome. Paige has two older brothers who are both married and are parents to our grandchildren and Paige's niece and nephews! I am a retired nursing faculty and Woody is a retired speech language pathologist. We live in Oxford, Mississippi (home of the Ole Miss Rebels!). I am the co-chair of the ASF Adult Taskforce.
Location: Oxford,
Mississippi
Contact:
Missouri
Katie Kilcullen
My name is Katie and I am mom to Angel Annie, age 19. Annie is the middle of 7 children, so we've always just tried to "go with the flow" and include her in all the life experiences. However, she's had some medical and behavioral challenges along the way that have not made life as smooth-sailing as we'd hoped. She's spent lots of time in the local Children's Hospital and we've traveled to two Angelman clinics over the years.
The wonderful parts of her life are that she's in her senior year at our local public high school and LOVES school! She has a team of care providers who take her out and about in the community where she likes to shop, swim, fish, visit animals and the library, volunteer, and watch movies with friends.
I have been supported along this Angelman journey by so many people in our community, so if I can be a support to someone, I would love to give that back!
Location: Chesterfield,
Missouri
Contact:
New Mexico
Kirstin Horne
Hello, my name is Kirstin. I'm a stay at home mom of three: Alex (21 & Del+), Andy (18) and Emily (15) and also a full-time student. After a previous life as a school teacher I am experiencing my midlife reevaluation and am in nursing school. I will finish my BSN this August! My husband, Doug, is retired Air Force and now flies for the NFL.
After many many moves we decided to stay in Albuquerque to enjoy the weather, the mountains, the food and the great schools/state resources for Alex. I enjoy reading, anything outdoors, running to relieve my stress, visiting with friends and family and every time our son's respite worker is here to give me a break!
Being a parent to a child with AS is not a journey any of us expected and I won't pretend that every day is wonderful even with all those hugs and smiles. However, I have learned to take one day at a time and to enjoy the moment. At least that's what I keep telling myself.
Location: Albuquerque,
New Mexico
Contact:
New York
Kelly Meissner
Founder and CEO of Kate's Kause, a grassroots charity inspired by her daughter Kate, has spearheaded initiatives to raise funds for the construction of accessible and inclusive recreation facilities. Her tireless efforts culminated in the realization of Kate's Place for Everyone in Elmira. Kelly is the former Executive Director of the Angelman Syndrome Foundation Canada and currently holds the position of board chair for Elmira District Community Living.
Driven by her daughter's journey, Kelly advocates for an inclusive and community-centered lifestyle for individuals with disabilities, a passion that has taken her across North America to participate in conferences and workshops on inclusion. Her commitment to supporting families further extends to her role as the Family and Community Engagement Coordinator for the Developmental Services Workforce Initiative, where she is excited to work as a team to make a profound impact.
Location: Elmira,
New York
Contact:
Steven Mastrocola
Steven is father to Mason (Del+), Gwendalyn and Mason. Since Mason's diagnosis, Steven has focused his personal time on advocating for Angelman syndrome awareness, navigating government and school resources, becoming heavily involved in the local special needs community 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 Angelman Strong event in Westchester, NY. They regularly take Mason to the Angelman Clinic in Boston and attend the bi-annual ASF Conferences. Steven works in NYC, is originally from Long Island and currently resides in Westchester.
Location: Westchester,
New York
Contact:
North Carolina
Taylor Geathers
Taylor Geathers is a loving wife and mother to three incredible children—Marlee, Nova, and Krew. When Marlee was diagnosed with Angelman syndrome at 19 months old in 2016, Taylor's life took a new direction. Her work as a social worker reflects her deep empathy and dedication to helping others. As an ASF Board Member, she passionately advocates for Angelman syndrome awareness and supports other families navigating this journey. Taylor's commitment to her family and community showcases her compassionate heart and unwavering resilience.
Location: Charlotte,
North Carolina
Contact:
Zan Lea Liccione
I am single mother of 4 grown children and 3 grandchildren. My two youngest, Adrianna and Dante have a very rare form of AS. We only received a genetic confirmation two years ago! I remember so vividly how hard the early days were as I was navigating all that goes with AS and the isolation that can come with finding some sense of equilibrium. I think our family is in an amazing place now and want to give back and provide some information and support if we can!
Location: Greensboro,
North Carolina
Contact:
Oklahoma
Chelsea Merrick
I am the mom to two beautiful children! Kaiden my oldest, is nine years old and my youngest, Kenna is 6 years old! Kenna was diagnosed with Angelman syndrome in 2018 at 4 months old and is Deletion +. I am Kenna's full time caregiver while my husband works full time.
We live 10 miles west of the Oklahoma City.Our family received Kenna's diagnosis at a very young age! So, something I am passionate about is offering help / assistance to those families who are just receiving their child's diagnosis as they are trying to navigate through those first few months of diagnosis.
Kenna has a lot of medical complexities on top of Angelman syndrome and the symptoms that arise with our diagnosis. Kenna uses a feeding a tube daily, and most recently was put on IV nutrition with a central line. I have a lot of experience with these and love to offer my support in those areas when it's needed! I am also currently the Oklahoma Angelman Strong coordinator and have really enjoyed stepping into the role!
Location: Yukon,
Oklahoma
Contact:
Pennsylvania
Erin Ree Jinkens
Everyone knows me as, Hendrick's mom, and I love that. He has taught me how to love fiercely, the importance of being a die hard advocate and to always recognize the people who show up on the hard days because they are also the same people who fill up our cups. I'm also a mom to his younger brother, Ari and wife to Andy. We make really good team and know that it takes a lot more than the 4 of us to weather the storms of AS so we can celebrate all of the other parts of our lives.
Location: Claysville,
Pennsylvania
Contact:
Shawna Lantzer
I am the mom to Lainey who is 4 (deletion +). We live in Delaware county, PA. I worked In healthcare for about 11 years before deciding to be a stay at home mom after Lainey's diagnoses. When Lainey was diagnosed we were so thankful to have the the ASF to help guide us on this journey. I would love to be able to share our resources that have worked for us in the Delco area and just be an ear to listen. The Angelman syndrome community has been amazing to us and I'm excited to be able to connect with other families!
Location: Trainer,
Pennsylvania
Contact:
Tennessee
Christi Gould
David & I have been married 26 years and live in Middle Tennessee. I'm blessed & delighted to be a stay-at-home mom. In a rare moment to myself, I like to crochet, read, sleep or visit with a friend. I am a caregiver at heart, investing my time in making sunshine care packages and planning women's retreats. David and I both enjoy good coffee and hanging out with our boys. Hobbies include laundry, changing diapers, cooking chicken nuggets & french fries, driving through the carwash and lots of water play. We have seven children, ages 6-23. Our 4 oldest kids (Molly, Max, Tanner and Tate) are amazing young adults & teens, launching into the world. Our son, Ian, was born with Down syndrome & has intractable epilepsy. We adopted Isaac, living with Angelman syndrome (del +), as a baby. And we adopted Charlie at birth with a Down syndrome diagnosis.
Location: Columbia,
Tennessee
Contact:
Christian Hommes
My wife Hilary and I have been involved with ASF for over 5 years and are passionate about engaging the community as well as Angelman families. As Physician Assistants, we hope to use our medical background to assist in the understanding of the complex clinical and scientific issues that our children live with. I also hope to use my current position working with clinical trials as a gateway to help educate families that are less familiar or don't know where to start. Hilary and I organize yearly events or participate in races to raise awareness and funds. We hope to help the Angelman community in any way possible!
Location: Hendersonville,
Tennessee
Contact:
Drew Wilkerson
I am a brother to Paige, age 30 with UPD. I live in Franklin, Tennessee, with my wife and son. I have been an elementary school teacher for 13 years, with the last 12 of those in first grade. I have been attending ASF conferences since childhood and have served as a leader in the Sibshop several times. I enjoy helping parents understand the sibling experience and connecting with other siblings.
Location: Franklin,
Tennessee
Contact:
Ericka Barrett
My name is Ericka Barrett and I am a native of Nashville, TN. I am a Licensed School Social Worker employed with the Metro Nashville Public School System as well as respectfully serving as a board member for Tennessee Developmental Disabilities Policy and Procedures Council. My youngest son Taylor was diagnosed in 2013 with AS Deletion. His diagnosis motivated me to become a social worker. Serving as a Champion for the ASF in Tennessee gives me great honor and pleasure. I will not only provide you with resources but encourage, uplift and stay connected with you as we travel this path together. I have a passion for gardening, cooking and reading.
Location: Whites Creek,
Tennessee
Contact:
Texas
Betsy Black
Betsy lives in Texas with her husband, Jared, and their four kids. Their youngest, Sophie, was diagnosed with Angelman syndrome in 2020 after her second birthday. The family has gained so much knowledge and hope from the ASF, and they love celebrating each of Sophie's awesome achievements! Betsy is a co-coordinator for the Angelman Strong Event in DFW.
Location: Keller,
Texas
Contact:
Tashia Nichole Encinas
My name is Tashia Encinas mother of 4 year old twins which one is Angelman Deletion. Currently I'm a stay at home mom about to enter back into the workforce. I love skating, reading, and family oriented activities. My husband and I are driven by our twins especially our angel giving him the best love and quality to have his needs met.
Location: El Paso,
Texas
Contact:
Utah
Mindy and Troy Jensen
It seems each Angel has his or her personal challenges, that may be similar or very different than other Angels. Our Angel was one of the youngest diagnosed back in 2000 at 18 months old. Little was known and resources were scarce. Austin is the second of our six kids and has been a great influence on each of us. He is a lower functioning, deletion positive, joyful Angel, who people look to when they need the best of hugs. Our kids are recognized as service oriented, caring, tolerant and patient people, who are respectful and understanding of others. This is the value of having an Angel in the family. Life is a little different, but it is accurate to say that Different is Good. From seizures to the physical and mental ailment, we have seen most everything. We've been through the diagnosis, treatment, education, transition and guardianship. We are better for having maneuvered this gift in life.
Location: South Jordan,
Utah
Contact:
West Virginia
Lesley McCallister
Lesley McCullough McCallister is the proud sister of Kate McCullough (deletion +), who was diagnosed with Angelman syndrome in 1989 at one-year of age. Lesley's family has been involved with the Angelman Syndrome Foundation since its inception in the early 1990s. She has been a frequent volunteer and speaker on sibling issues and panels at past ASF family conferences, and brings the perspective of a sibling to an adult with AS to the ASF Board.
Lesley, her husband Drew, and their children reside in Charleston, WV.
Location: Charleston,
West Virginia
Contact:
Wisconsin
Aaron Ferguson
Aaron is the older brother to Caleb. He has been an advocate for Angelman syndrome ever since because it has shaped who he is. Aaron has used his career in journalism to raise awareness. Aaron loves to attend fundraisers, local gatherings and offer advice. He served on a siblings panel at his first family conference in 2005 and has led SibShops since 2017. In his free time, Aaron likes to travel to visit family, friends, sporting events, the beach and other fun activities.
Location: Sun Prairie,
Wisconsin
Contact:
Jenna Thurin
My husband's name is Joe, and we have 4 wonderful boys! Benny is our 4 year old Angel (deletion +). His big brothers are Jake (7), Beckett (15) and Kyler (17). We live just north of Milwaukee. I am currently an Instructional Coach at our local elementary school. Our family joined the ASF community when Benny was about 16 months old in 2021. We cannot say enough about ASF, and have loved every minute of being involved with this supportive group.
My mission has always been to do anything I can to help Benny and other individuals living with Angelman syndrome to thrive in their world! I am honored and excited to support you and your family with anything that you might need. It takes a village as they say, and I want to be part of yours.
Location: Hubertus,
Wisconsin
Contact:
Magaly Santana-Spidell
Champs with Adults with AS
Dawn Bly
My husband, Russell, and I live in Northwestern Minnesota. Our youngest son David, was diagnosed with AS in 1997 when he was 17 months old. His diagnosis caught us off guard. Angelman syndrome was unfamiliar to us, and we were unsure of where to look for more information. With the assistance of the Angelman Syndrome Foundation, we began to connect and bridge the necessary resources for David and the rest of our family. Because it was so helpful to us, I have committed my life to helping others connect.
I'm here to help as an ASF Family Champion, offering information, a listening ear, or assistance in realizing the potential of your angel. Every child has the right to "belong," and they should be able to participate in life to reach their potential. I am passionate about helping others find ways to live, work, and play in their environments.
Location: Fosston,
Minnesota
Contact:
Hilda Tourians
My son is 32 and he has been a central part of my life even though he doesn't live me. I don't have any other children and will be happy to connect other parents who are interested in learning about how to survive divorce.
Location: Long Beach,
California
Contact:
Languages: English, Armenian, Farsi
Lesley McCallister
Lesley McCullough McCallister is the proud sister of Kate McCullough (deletion +), who was diagnosed with Angelman syndrome in 1989 at one-year of age. Lesley's family has been involved with the Angelman Syndrome Foundation since its inception in the early 1990s. She has been a frequent volunteer and speaker on sibling issues and panels at past ASF family conferences, and brings the perspective of a sibling to an adult with AS to the ASF Board.
Lesley, her husband Drew, and their children reside in Charleston, WV.
Location: Charleston,
West Virginia
Contact:
Mindy and Troy Jensen
It seems each Angel has his or her personal challenges, that may be similar or very different than other Angels. Our Angel was one of the youngest diagnosed back in 2000 at 18 months old. Little was known and resources were scarce. Austin is the second of our six kids and has been a great influence on each of us. He is a lower functioning, deletion positive, joyful Angel, who people look to when they need the best of hugs. Our kids are recognized as service oriented, caring, tolerant and patient people, who are respectful and understanding of others. This is the value of having an Angel in the family. Life is a little different, but it is accurate to say that Different is Good. From seizures to the physical and mental ailment, we have seen most everything. We've been through the diagnosis, treatment, education, transition and guardianship. We are better for having maneuvered this gift in life.
Location: South Jordan,
Utah
Contact:
Robin Wilkerson
My husband, Woody, and I have a daughter, Paige, who has Angelman syndrome. She is 31 years old and has the UPD transmission of Angelman syndrome. Paige has two older brothers who are both married and are parents to our grandchildren and Paige's niece and nephews! I am a retired nursing faculty and Woody is a retired speech language pathologist. We live in Oxford, Mississippi (home of the Ole Miss Rebels!). I am the co-chair of the ASF Adult Taskforce.
Location: Oxford,
Mississippi
Contact:
Stacey Davis
I am the mom of Tyler who is 23 yrs ( Del + ) who was diagnosed at 16 mos. We live in Colorado with his dad Clay. His older brother, Clay III lives close by with his wife and two daughters. Tyler has been on a restricted diet since before the age of 3 yrs beginning with the Ketogenic diet and transitioning to a low carb diet which he is still on today. I have had the privilege to be able to work from home and also be Tyler's care provider. As all of our "angels", Tyler touches the heart of everyone he meets and makes a lasting impression!
From the beginning, I have advocated for inclusion with Tyler's typical peers and he is an active part of his community! He has been the Varsity Softball and Baseball manager throughout his entire high school years and has continued after he graduated. We have and continue to pushed Tyler to achieve as much as possible and to experience as many new activities and adventures as he can! Being a mom of an older angel and seeing how WRONG the prognosis for Tyler's quality of life was that we were given at his diagnosis, makes me so very passionate about sharing our journey and the amazing potential our angels have.
Please feel free to reach out to me with any questions, as a sounding board, or if you just need a friendly ear from someone who understands your challenges!
Location: Brighton,
Colorado
Contact:
Zan Lea Liccione
I am single mother of 4 grown children and 3 grandchildren. My two youngest, Adrianna and Dante have a very rare form of AS. We only received a genetic confirmation two years ago! I remember so vividly how hard the early days were as I was navigating all that goes with AS and the isolation that can come with finding some sense of equilibrium. I think our family is in an amazing place now and want to give back and provide some information and support if we can!
Location: Greensboro,
North Carolina
Contact:
Champs in International Locations
Maharashtra, India
Pooja Joshi Bhadrige
I am 33 year old, a mother to a 5 and a half year old Yug. Yug was diagnosed with AS when he was just 7 months old. Keeping aside my job as a bank manager, I decided to dedicate all of my time to my angel. In India, most of the people are unaware about AS and hence, I have started a website to spread awareness about AS and to help angelman parents get in touch with others and also get medical help if needed: www.angelmanfoundation.in Also, I have arranged for an exclusive Angelman syndrome workshop in March 2020 in Mumbai for Angelman families all across India which will be attended by many such parents and profound doctors.
Location: Mumbai,
India
Contact:
Dubai, United Arab Emirates
Sana Sadeq
Joud was diagnosed with AS deletion at 22months. My husband, Mujeer and I have been living in UAE for over 10years. Since her diagnosis, we have been working with multiple therapists on Joud's development needs that will provide her a better quality life. Joud is three and a half years old now; she walks without any support. She is kind, curious and social.
ASF has been a great source of information. When we got the diagnosis, we were approached by the family champion in UAE, Souzie Mackay, who was so kind to support and answer our questions. Now it's our turn to give back to this amazing community.
Location: Dubai,
UAE
Contact:
Souzie Mackay
We have been expatriates in the UAE for over twelve years. Our Angel, Kimia, was born nearly ten years ago. She has a wonderful older brother called Alec.
My decade-long journey of cutting new trail through health and education systems, social and workplace settings and changing residential environments, has left me well equipped to offer guidance and support to anyone experiencing the difficulties and often rewarding challenges which go hand-in-hand with the Angelman world.
We have been raising awareness of AS and mark 15th Feb in ways that involve Kimia's school and broader society, successfully generating media interest and facilitating new contacts within our community. Kimia has donated her hair to charity twice so far, 2018 and 2020. I am honored to be considered a Family Champion for ASF, to help newly diagnosed families as well as bringing existing Angelman families together.
Location: Dubai,
UAE