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 Sandy Ruffalo 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

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

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.

Denver, CO | cinnredsnyder@q.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

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

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

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 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 Wilkerson

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

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

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 TN, 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

Maria Navarrete

Maria Navarrete

I have been married for 13 years to my wonderful husband Victor. Our daughter was born in 2007 and in 2011, she was diagnosed with Angelman Syndrome at the age of four. We have attended several Angelman Syndrome Foundation events, including the Walk and the biannual Conference. We love to meet other families and their Angels, and will assist in any way we can. We are also looking to start a support group for the Southwest area of the US.

El Paso, TX | tinyangel5@yahoo.com

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

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 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

Robin Wilkerson

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

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

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

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