Connecting families with families

ASF Family Champions

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 sruffalo@angelman.org.

Adult Champions

For families of adults with AS. 

International Champions

For families in international locations.

Alabama

Kerry Burden

Kerry Burden

Blake and I were married in 2003 and our twins, Nicholas and Briley, were born in 2008. Our daughter Briley was diagnosed with AS, Mosaic Imprinting Center Defect in 2011.

Hunstville, AL | kerryhburden@gmail.com

Arizona

Uribe Family

Regina Uribe

I am a proud mom of 2 kids, my oldest Natalia (4.5 years old) was diagnosed with AS when she was 3. My son Alex is 9 months. Natalia was diagnosed with mutation type. Getting your diagnosis is so overwhelming and I remember getting connected to other families that were dealing with AS made me feel a little less lost and gave me hope that things would be okay. Through a lot of therapy and work, Natalia continues to amaze us. We are not defined by the diagnosis and continue to push her to reach her biggest potential. She has the biggest personality and will give me the death stare when she doesn't want to do something. I also love when she requests her favorite songs with her communication device.

Gilbert, AZ | uribe.reg@gmail.com

Michael Sanderfer

I am father to Kiera, who is 18 and diagnosed with AS. Kiera loves puzzles, travel (by plane and car). I have been a Family Advisor with Raising Special Kids for 10 years.

Phoenix, AZ | mksanderfer@yahoo.com

Arkansas

Elizabeth Roberts and family

Elizabeth Roberts

Jacob and I live in Fort Smith, Arkansas with our daughter, Ellie. She was diagnosed with AS in August 2019. While we are new to the Angelman community, we have submersed ourselves in it.

Fort Smith, AK | emg1119@aol.com

California

Jamie Cruz

Jamie Cruz

Proud mom to three wonderful boys, Dylan, 8 years old, was diagnosed with AS at 13 months old. He is now thriving in third grade, fully included in our neighborhood school with his friend. I am always happy to listen or chat if you have any questions!

San Diego, CA | Jamiedots@gmail.com

Beth Venz

Beth Venz

I'm a Mom of three, my oldest (Julia) was diagnosed at 15 months with Angelman Syndrome UPD, she is now 12 years old. My younger kids are both boys ages 7 & 9. I work part-time from home in Environmental Consulting. Our family loves spending time at the beach and all fun family activities that San Diego has to offer.

San Diego, CA | Venzfam@gmail.com

Ashley Weinberg and family

Ashley Weinberg

My son Conner was diagnosed with Angelman Syndrome UPD when he was 5 years old. Our diagnosis journey was a long one.
I've been a pediatric home health nurse for a little over 6 years now. Conner is the light of our lives, he has a big brother named Taylor, 14yrs, and a little sister named Ellia, 2yrs. His Dad, Jamison, stays home to take amazing care of him through IHSS. We are happy to help other families in any way we can.

Wildomar, CA | Ashleyweinberg2019@gmail.com

Natalie Dohrmann

I am the lucky mother to 3 beautiful children. Danika (Del pos) just turned 14, Evan is 11, and Harper is 9. My husband is Greg Dohrmann who was ASF Board President for 4 years.

Stockton, CA | nhavro@yahoo.com

Annie Morgan

Annie Morgan

Annie along with her husband Daniel, son Brody & her daughter Ava (who received her diagnosis in 2014) live in the Folsom area of California. From the moment of their diagnosis for Ava, they have committed their life to living undefined by the circumstances of this syndrome. Through their vulnerability & passion to impact this community on their social media platforms & the special needs community, they live life determined to encourage that through example in those around them. While they would never have wished this diagnosis on any one, they are grateful for the community that is thick in support, the hunger to care & the drive to keep hope alive through the ongoing efforts of creating resources & treatments towards a cure & a helping hand along this journey.

Folsom, CA | Blessedforthismess@gmail.com

Colorado

Cindy Snyder

I am the mom to my son, PJ (deletion +) who is 33 years old. I adopted PJ from my special education class 25 years ago. Although PJ doesn't walk independently, he loves to participate in triathlons with Athletes in Tandem. I coordinated the ASF Walk in Denver for 10 years and was the recepient of the Harry and Audrey Angelman Award for Meritorious Service in 2013.

Loveland, CO | cinnredsnyder@gmail.com

Stacey Davis and her son Tyler

Stacey Davis

I am the mom of Tyler who is 20 yrs ( Del + ) who was diagnosed at 16 mos. We live in Colorado with his dad Clay and his older brother Clay III. 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 at this point will continue after he graduates. 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!

Brighton, CO | Staceyadavis17@gmail.com

Connecticut

Jennifer Kubicza

I have two sons, Lincoln and Cole. Cole was diagnosed with AS in 2012 and my husband and I have been involved with the ASF since then including coordinating the ASF Walk in Cheshire, CT.

I work in insurance and enjoy taking road trips with the family, especially to Disney World and ASF conferences.

I am happy to help or chat anyone on this journey with AS and offer support and advice.

Cheshire, CT | jennkubicza@gmail.com

Florida

Vandana (Vee) Patel

We are a family of 4, 1 son born in 2010 and 1 daughter, Zara, born in 2013. Zara was diagnosed in 2016 with AS - UBE3A mutation. Early intervention made a huge difference. She no longer needs Physical Therapy, but does require ongoing Speech Therapy, Occupational Therapy and ABA for continued progress.

Estero, FL | Pate0106@gmail.com

Eslin Guice and family

Eslin Guice

My name is Eslin and I am the proud mom to 3 amazing kids. My daughter Gianna, now 4, was diagnosed with AS (del +) when she was 15 months old. I vividly remember being overwhelmed and lost, not knowing where to turn for help. As an ASF Family Champion, I want you to know that you are not alone on this journey! I’m here for anyone that needs a listening ear and/ or resources to help ensure your angel meets his or her greatest potential. We are in this together and together we can help our amazing angels achieve so much!

Coral Springs, FL | eslin.guice@gmail.com

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.

Canton, GA | Kathryn.houghton.ely@gmail.com

Illinois

Castelli family

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. We 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.

Columbia, IL | castellillc@gmail.com | courtneylsullivan@yahoo.com

Kansas

Laura Sargent and family walking on the beach

Laura Sargent

My husband, Patrick, and I are the proud parents to Colin (4yo) and twin 2yo girls, Kellie and Maddie (our Angel). We received Maddie's diagnosis in early 2020, on the brink of the COVID pandemic. We had the opportunity to travel to Mass General to establish care with Dr. Thibert before the country shut down. Over the past year we have immersed ourselves in the Angelman community. We are so grateful for the expert parents and professionals, the opportunities for Maddie, and the ongoing research and clinical trials directed towards improving all individuals' lives affected by Angelman syndrome.

I am a pediatric nurse practitioner and I have spent my career working with children with special or different needs. Maddie's diagnosis has enabled me to directly experience parenting a child with so many wonderful, yet challenging needs. While there are certainly tough days, the smiles, determination, and grit Maddie embodies makes it all worth it. If you live in the Kansas City area, Patrick and I would love to connect and be a resource for you as you travel down your own journey with Angelman syndrome.

Kansas City, KS | Ljshaw84@gmail.com

Louisiana

Jeanne Smith

Jeanne and her husband, Frank are parents to a 16 year old daughter, Molly, who is diagnosed with AS. Molly has three older siblings - Joey, Stephanie and Travis.

Stonewall, LA | 4iu@comcast.net

Chelsea Beebe

Chelsea Beebe

You have received your loved one’s “date” and I am certain you know what date I am referring to! Yes, your loved one has a diagnosis date. This is a date you will likely remember as long as you live. Whether your loved one received an Angelman Syndrome diagnosis years ago, months, weeks, or days ago, the journey can be scary, lonely, and frustrating. However, the journey can also be positive, loving, and rewarding. I am quite familiar with this range of emotions because our family has a “diagnosis date” just like you. My daughter received her Angelman syndrome (UPD genotype) diagnosis on December 20, 2013 at 15 months old. I am one of the ASF Family Champions in Louisiana and I am so glad you have found us! Your visit to this page may mean you have questions, need encouragement, want to get involved, need to vent, want to celebrate, or want a new connection that understands your situation. As a mom to an “extra needs” child, I am more than happy to help in any way I can. I will do my best to answer your questions and get you to the right place for anything I cannot assist with. I look forward to meeting you, getting to know you, and walking with you on the Angelman syndrome journey!

Bastrop, LA | chelsealexis115@gmail.com | (318) 267-7191 (call or text)

Maryland

Leigh Sutherland

Leigh Sutherland

Leigh is the mother of a 32 year old Angelman (del+) daughter, Alex. Leigh has been an active member of the Angelman and special needs community since Alex's AS diagnosis in 1993. The Maryland, DC, Virginia region has a large and supportive community of Angelman families with Angels from age 50 to newly diagnosed infants. We are here to help and support each other.

Chevy Chase, MD | leigh.sutherland@gmail.com

Massachusetts

Sarah Merwin Cobb

I am the proud mother of Logan (6 years old) and Gracie (2 years old). Logan was diagnosed with Angelman Syndrome (deletion +) shortly after his second birthday. His fierce determination, contagious zest for life, and heart of gold, inspire me every day. Before I had children, I worked as an Intensive Special Needs Teacher at Perkins School for the Blind in Watertown, MA and Orange County Public Schools in Orlando, FL.

North Grafton, MA | skmerwin@yahoo.com

Michigan

Kathy Johnson

Kathy Johnson

Kathy is the mom to Amanda 28, Angela 22 and Rocky 18, all of whom have the ube3a mutation. Kathy has worked tirelessly to make sure her kids live in their own home, with support staff to care for them. Kathy's expertise lies in helping parents build a successful self determination arrangement. She has been a speaker at the ASF Family Conference on how to train support staff, chipping away at the mountain to find services, and how to hire, train and keep support staff. She also is a speaker at conferences in her home state of Michigan. She advises professionals on how they can help support their clients with in-home supports and speaks to parents on how to run a self determination arrangement successfully.

Michigan | Rhodes48652@yahoo.com

Minnesota

Kim & Dustin Rossow

Our Angel Tyler is now 13 years old and big brother to Isaac (10) and Lucas (6). He is healthy and active and absolutely loves playing hide-and-seek, live music, splash pads and water parks and pretty much anything social. He is nearly always signing to find his "brothers", his "mom or dad", or requesting "music". With his signs and his talker (ipad) we are able to understand many of his needs and desires. We are very proud of his communication skills! He keeps us on our toes, but he absolutely lights up every room he enters!

Carver, MN | kjrossow@gmail.com

Mississippi

Robin Wilkinson

Robin Wilkerson

My husband, Woody, and I have a daughter, Paige, who has Angelman syndrome. She is 26 years old and has the UPD transmission of Angelman syndrome. Paige has two older brothers who are both married and who have one child each. I am a retired nursing faculty and Woody is a retired speech language pathologist.

Oxford, MS | robin.r.wilkerson@gmail.com

Missouri

Katie Kilcullen

Katie Kilcullen

My name is Katie and I am mom to Angel Annie, age 14. Annie is the middle of 7 children, and she keeps all of us laughing and dancing! Throughout this AS journey, we've been to many conferences along the way, traveled to San Diego Rady Children's Hosptial Angelman Syndrome Clinic, participated in a clinical trial and several AS walks, and attended the Camp for Courageous Kids. I'd love to talk to any families who need support in this journey especially on topics about education and ABA, seizure control, puberty issues, or caregiving.

St. Louis, MO | kilcullenkatie@gmail.com

Nevada

Martha Estrada

Martha Estrada

I have been involved with the ASF since Rafael was 3 years old and I organized the first walk in Las Vegas. I currently work for FEAT (Families for Effective Autism Treatment) as their family resource specialist. I'm fluent in Spanish and live with my Son Rafael who is 15 and my husband Lazaro.

Las Vegas, NV | havanaflor@yahoo.com

New Jersey

Shari Caspert

Shari Caspert

Shari Caspert is Mom to Matthew - (age 23, Deletion Positive), has been involved with the ASF since 1998. Her family’s vast experience continues to serve the Angelman community, especially with issues surrounding the transition from school age to the adult world. Shari lives in Northern New Jersey with her husband, Mitchell.

North Caldwell, NJ | scaspert@gmail.com

New Mexico

Kirstin Horne

Kirstin Horne

Hello, my name is Kirstin. I’m a stay at home mom of three: Alex (16 & Del+), Andy (14) and Emily (11). My husband, Doug, is retiring this year from the Air Force after almost 25 years! After many many moves we have 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 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. 😉

Albuquerque , NM | dandkhorne@hotmail.com

New York

Steven Mastrocola

Steven is father to Mason (Del+) and Gwendalyn. Since Mason’s diagnosis, he 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 ASF Walk 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.

Westchester, NY | angelmanparents@gmail.com

Rita Molino Sell and Scotty

Rita Molino Sell

I am a mom, advocate and educator...my son Scotty was diagnosed with Angelman syndrome at age 8. He loves school (most days!), his older brothers Ryan (28) and Christopher (23), his dad, and his dogs, Ellie and Beau. I work full time as a special educator with 8 students who have multiple medical and physical challenges. I also work part time as a professor for TEACH-NOW Graduate School for Education. Scotty travels with me when I speak at Council for Exceptional Children Conferences, but when we’re not traveling, we love to go out to eat, go to the movies, chill at home and watch Disney movies and, his favorite, go to concerts together. Scotty is now 17 and has taught me so much about what is important in life. He is pure joy and love.

Williamsville, NY | ritamolino3@yahoo.com

Ohio

Cassandra Clement and Troy

Cassandra Clement

We are a family of four. Sophia is a dedicated sister, whom sits on a state board for adult siblings of people with developmental disabilities. Troy is a 21 year old whom we are helping to figure out how to make a positive impact on his world. He has Angelman Syndrome (deletion positive). We are trying to make sure that Troy can share his gifts with the community and have a good life as an adult.

Cincinnati, OH | Cassandra.m.clement@gmail.com

Oklahoma

Chesser Family photo

April Chesser

My husband, Donny, and I are proud parents to Mason (9yo) and Landree (4yo and our Angel, UPD). We received Landree’s diagnosis in April of 2021. We live just outside of OKC in a smaller town, Choctaw.

While we are still new in this journey, we have immersed ourselves within the Angelman community. We look forward to helping other families navigate this new and often unknown world of Angelman syndrome. I am here for anyone who needs help finding resources, someone to talk to during those difficult days, share in our kids achievements and walk this life together. Our angels can achieve anything they want, it may just look a little different and that’s ok!

Choctaw, OK | aprilchesser@yahoo.com

Pennsylvania

Chelsee Feidt

Chelsee Feidt

My husband Roy and I are the proud parents of 3 kiddos, Chase is our oldest and was diagnosed with AS (deletion) when he was almost 2 years old. Chase has a younger sister Londyn and younger brother Maximus. Roy and I were very overwhelmed when Chase was first diagnosed, however with lots of therapy and support Chase is doing fantastic and amazes us every day. Chase really keeps us on our toes, but we wouldn't have it any other way. I am a stay at home mom and also the AS walk coordinator for the Philadelphia location. I am so happy to be more involved with the ASF, and I can not wait to get connected with you and help and support you anyway that I can.

Philadelphia, PA | cfeidt19@gmail.com

South Carolina

Nicole Ferguson

Nicole Ferguson

I am a stay at home mom with four children, ages ranging from 1-18 years old. My only son, who is 8, has Angelman Syndrome.

Loris, SC | nicoleferguson1982@gmail.com

South Dakota

Alyssa Shoemaker

Alyssa Shoemaker

Our son Drake has Angelman Syndrome. He is 6 years old and in 1st grade. Drake has three brothers. Even though Drake has many challenges, he is always the happiest little boy and brings a smile to everyone he meets!

Webster, SD | anolte456@yahoo.com

Tennessee

Barrett family photo

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.

Nashville, TN | erickabarrett123@gmail.com

Texas

Suzane and Kayleigh Andrews

Suzanne Andrews

I’m a mom to two, my oldest Kayleigh, 14, was diagnosed with Angelman syndrome at 18 months old. We live in the Austin area and have navigated many of the challenges that come with having a child with AS, including insurance and the education system. Kayleigh is currently homeschooled and when not in school she loves swimming and going on family bike rides. I also volunteer with a local non profit who provides resources for children with special needs.

Pflugerville, TX | Suzanne.andrews@sbcglobal.net

Utah

Mindy and Troy Jensen

Our Angel is Austin Jensen, who has now entered his early adult years. Having an angel in our family has been a very special and rewarding experience. Austin was one of the youngest Angels ever diagnosed at the time of his diagnosis. Our other 5 children have a special ability to love and understand those who have disabilities. We have learned much through our experience and we open our door to those who need support, comfort, or even a listening ear as you grasp at understanding blessings and challenges of raising your own special Angel.

South Jordan, UT | mindynjensen@comcast.net | troyjensen@comcast.net

Washington

Erin Platts and family

Erin Platts

I am Erin, mom to angel, Bridgitte, 30 years old and Del+, along with her brother, Justin. My husband David and I have been married 35 years! We are caring for Bridgitte at home in the Seattle area.
I have been involved in volunteer work for Kent Jaycees, Washington Jaycees, Special Olympics, Dream On Foundation, Washington State Developmental Disabilities Council, and Pacific Northwest Angelman Syndrome Foundation, on which both my son and husband have served as President in the past.
Please feel free to send a friend request on Facebook or email me. Pretty much anything you are experiencing with your angel, we’ve been there, done that – except for out of home living situations. I will try to answer your questions or refer you to someone else who may be more knowledgeable on the subject.

Seattle, WA | erinkplatts@gmail.com

Trent, Stephanie and Easton Nillson

Trent and Stephanie Nilsson

We are Trent and Stephanie Nilsson and we live in Prosser, WA with our 2 year old son Easton! He is our whole world and puts a smile on our faces constantly with his contagious laugh! Easton began having seizures at 14 months old and was diagnosed with Angelman syndrome (del+) shortly after. Since his diagnosis and the start of his seizures, we have strived to research and learn as much as possible to help him the best we can. Being a part of the AS family got us through some of our toughest times and we want to also be there for anyone on this journey with questions, advice, or just a listening ear to vent. Please don't hesitate to reach out!

Prosser, WA | Stephn@nilssonzier.com

Wisconsin

Marshall family in front of a red truck

Jennifer Marshall

We have 3 kids, and our angel, Hazel is our middle child. Hazel was diagnosed at age 2 (deletion +). Please feel free to reach out to me for any questions or simply just a listening ear! This is a journey and we are all here to support each other!

Glendale, WI | Jennifer.e.marshall@outlook.com

Champs with Adults with AS

Rosetti Family

Sue and Jeff Rossetti

We have two sons, Nathan, age 23 (UPD) and Kevin, age 26 (non-AS). We have been going to the ASF Walk in Chicago for 20 years and try to go the ASF Family Conferences whenever possible. Nathan is very sociable. He enjoys being out in the community and using his tablet. Most of all Nathan enjoys eating, whether it be at home, take out, or dining out!

Tinley Park, IL | suerossetti@comcast.net

Kathy Johnson

Kathy Johnson

Kathy is the mom to Amanda 28, Angela 22 and Rocky 18, all of whom have the ube3a mutation. Kathy has worked tirelessly to make sure her kids live in their own home, with support staff to care for them. Kathy's expertise lies in helping parents build a successful self determination arrangement. She has been a speaker at the ASF Family Conference on how to train support staff, chipping away at the mountain to find services, and how to hire, train and keep support staff. She also is a speaker at conferences in her home state of Michigan. She advises professionals on how they can help support their clients with in-home supports and speaks to parents on how to run a self determination arrangement successfully.

Michigan | Rhodes48652@yahoo.com

Cindy Snyder

I am the mom to my son, PJ (deletion +) who is 33 years old. I adopted PJ from my special education class 25 years ago. Although PJ doesn't walk independently, he loves to participate in triathlons with Athletes in Tandem. I coordinated the ASF Walk in Denver for 10 years and was the recepient of the Harry and Audrey Angelman Award for Meritorious Service in 2013.

Loveland, CO | cinnredsnyder@gmail.com

Leigh Sutherland

Leigh Sutherland

Leigh is the mother of a 32 year old Angelman (del+) daughter, Alex. Leigh has been an active member of the Angelman and special needs community since Alex's AS diagnosis in 1993. The Maryland, DC, Virginia region has a large and supportive community of Angelman families with Angels from age 50 to newly diagnosed infants. We are here to help and support each other.

Chevy Chase, MD | leigh.sutherland@gmail.com

Robin Wilkinson

Robin Wilkerson

My husband, Woody, and I have a daughter, Paige, who has Angelman syndrome. She is 26 years old and has the UPD transmission of Angelman syndrome. Paige has two older brothers who are both married and who have one child each. I am a retired nursing faculty and Woody is a retired speech language pathologist.

Oxford, MS | robin.r.wilkerson@gmail.com

Shari Caspert

Shari Caspert

Shari Caspert is Mom to Matthew - (age 23, Deletion Positive), has been involved with the ASF since 1998. Her family’s vast experience continues to serve the Angelman community, especially with issues surrounding the transition from school age to the adult world. Shari lives in Northern New Jersey with her husband, Mitchell.

North Caldwell, NJ | scaspert@gmail.com

Erin Platts and family

Erin Platts

I am Erin, mom to angel, Bridgitte, 30 years old and Del+, along with her brother, Justin. My husband David and I have been married 35 years! We are caring for Bridgitte at home in the Seattle area.
I have been involved in volunteer work for Kent Jaycees, Washington Jaycees, Special Olympics, Dream On Foundation, Washington State Developmental Disabilities Council, and Pacific Northwest Angelman Syndrome Foundation, on which both my son and husband have served as President in the past.
Please feel free to send a friend request on Facebook or email me. Pretty much anything you are experiencing with your angel, we’ve been there, done that – except for out of home living situations. I will try to answer your questions or refer you to someone else who may be more knowledgeable on the subject.

Seattle, WA | erinkplatts@gmail.com

Stacey Davis and her son Tyler

Stacey Davis

I am the mom of Tyler who is 20 yrs ( Del + ) who was diagnosed at 16 mos. We live in Colorado with his dad Clay and his older brother Clay III. 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 at this point will continue after he graduates. 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!

Brighton, CO | Staceyadavis17@gmail.com

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.

Mumbai, India | Poojajoshi86@yahoo.co.in

Dubai, United Arab Emirates

Souzie Mackay

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.

Dubai, UAE | souziemackay@hotmail.co.uk

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.

Dubai, UAE | sana-sadeq@hotmail.com

United Kingdom

Peter Patterson

Peter Patterson

Peter Patterson lives in the UK with his wife. His son Anthony, who had Angelman syndrome, passed away in 2003, but Peter’s passion for helping others with AS and for spreading awareness has only gotten stronger. Peter advocated for a memorial plaque to Dr. Harry Angelman at Gosport War Memorial Hospital and saw it presented on February 15, 2019. Read an article about it here. If you would like to reach out to Peter, he is ready and willing to help.

Gosport, Hampshire UK | leecofriendly@aol.co.uk