NOAH’s New Parent Program offers a trained parent liaison volunteer to families. The parent liaison will guide you through the many resources NOAH has to offer and provide you the opportunity to speak directly to a parent of a child with albinism who truly understands. If you are interested in learning more and sharing your experiences as a parent of a child with albinism, please complete the NOAH Parent Liaison Volunteer Interest Form to begin the process.
Get to know more about our fabulous Parent Liaisons by clicking on their picture below.
Meet our Parent Liaisons!
Calisha Anderson
Coming soon!
Katie Bailey
Coming soon!
Leanne Bellisario (Nause)
What is the make up of your family and where do you live? Please include ages of children and which child has albinism.
My family is made up of my husband, Tio and our children Bianca (5 years) with albinism, and Stefano (7 years) without albinism.
What does NOAH mean to you?
NOAH has been a huge source of support, information and connection.
Why did you want to be a Parent Liaison?
I feel it is one of the best gifts I received when Bianca was born, and I’d like to pay it forward.
Please share one thing that you wish you knew when you child with albinism was just diagnosed.
How amazing she will be.
What activities or hobbies do you and your family do for fun?
Arts and crafts, games, puzzles, swimming, golfing, baking and making homemade pizza.
If you were a sandwich, which kind of sandwich would you be?
Peanut butter and banana
Anne Contant
Coming soon!
Gacia Coronado
What is the make up of your family and where do you live? Please include ages of children and which child has albinism.
Our family lives in Wisconsin and consists of myself, my husband, Travis, and our two boys, Arek(8), and Matias (6-with albinism).
What does NOAH mean to you?
NOAH is our most reliable source of truth, and inspiration of hope. While many people have personal experiences, opinions, and ideas, NOAH is where we look for the most relevant and current information as it relates to albinism.
Why did you want to be a Parent Liaison?
I wanted to share with other parents the highlights that may be ahead for them, while still being able to meet them wherever they are in their own process. of the best gifts I received when Bianca was born, and I’d like to pay it forward.
Please share one thing that you wish you knew when you child with albinism was just diagnosed.
That it is ok to process and grieve what you had imagined for your child. While hope and reassurance are a given, I wish someone would have told me it was normal to also feel the flip side, and that it didn’t make me ungrateful for the child I have.
What activities or hobbies do you and your family do for fun?
We enjoy gardening, baking, Legos, reading silly stories, riding bikes, playing all kinds of board games, music lessons, and recently picked up rollerblading. We try our best to enjoy the short summers Wisconsin offers, but always find something to keep us busy!
If you were a sandwich, which kind of sandwich would you be?
Coffee Crisp!
Mandy Edmondson
What is the make up of your family and where do you live? Please include ages of children and which child has albinism.
Our family of 4 lives in the Dallas, TX area. My husband Matt and I have been married for 9 years and have 2 daughters, Daphne (7) and Ensley (5). Daphne has albinism (OCA1A).
What does NOAH mean to you?
NOAH has been an amazing source of comfort, community, resources, encouragement, hope, and fun. The ability to network with others, truly having an open and non-judgmental forum to ask questions, express fears, share wins, gain insights, and experience a sense of belonging has been more than we could have wished for. We value the friendships we have made along the way and are grateful to be part of this unique and amazing group!
Why did you want to be a Parent Liaison?
I want to be able to provide support to other families who may be experiencing similar thoughts, fears, and uncertainties that my family and I navigated through early on. Wondering what your child’s future may look like can be emotional, but if sharing what I’ve learned thus far can help bring light and focus in on all of the amazing accomplishments in store, I am excited to contribute in a meaningful way. Having the opportunity to let parents know they are not alone and being able to help welcome families into our wonderful NOAH community is fulfilling and brings me joy.
Please share one thing that you wish you knew when you child with albinism was just diagnosed.
I wish I knew how what was considered her disability actually would contribute to positively enhancing her other abilities, intelligence, and character, helping to shape her into a confident, self-advocating, kind, and inclusive young lady. Leaning into this journey and focusing on what your kids can do makes a huge impact!
What activities or hobbies do you and your family do for fun?
We love to travel, swim, go to amusement and water parks, play outside (sports/playground), go to events in the community, play games, and spend time with family & friends.
What is your favorite candy?
Reese’s Peanut Butter Cups
Erin Finfrock
What is the make up of your family and where do you live? Please include ages of children and which child has albinism.
My family and I live in Rancho Cucamonga, California. My husband Doug and I have 3 amazing kids, 1 of which has albinism and 2 that do not.
What does NOAH mean to you?
NOAH has been a source of information and support for us since we found out about our sons diagnosis over 8 years ago. We have felt a sense of connection with families navigating similar situations and NOAH has also helped our son feel proud of who he is.
Why did you want to be a Parent Liaison?
I really love helping people! I am excited to be able to support families in any way I can when it comes to learning more about albinism, being a parent of a child with albinism and all of the resources that NOAH offers.ard.
Please share one thing that you wish you knew when you child with albinism was just diagnosed.
My child is not just going to be okay… he is going to thrive!
What activities or hobbies do you and your family do for fun?
We love going to the beach, baseball games, fishing and watching movies.
What is your favorite candy?
Dark chocolate or gummy bears
Regan Gentile
What is the make up of your family and where do you live? Please include ages of children and which child has albinism.
My husband, Mike live in Elmhurst, IL and I have four children. Elise is 10 and has albinism, Colette is 8, Mac is 5 and James is 3 and also has albinism.
What does NOAH mean to you?
NOAH is not just a resource for our family but it is a connection point to so many families. We know that our children will always have this support system; not only will Elise and James continue to build relationships through NOAH but their siblings will also be part of the community.
Why did you want to be a Parent Liaison?
I wanted to be there for families after a recent diagnosis the same way mine was there for me. The more I could connect with other parents the more awareness I could raise and assure them that they were doing all the right things for their child..
Please share one thing that you wish you knew when you child with albinism was just diagnosed.
I wish I knew that everything would be okay and that we would meet so many new friends locally and nationally who be such a support.
What activities or hobbies do you and your family do for fun?
Bike riding and traveling
What is your favorite candy?
Sour patch kids
If you were a sandwich, what sandwich would you be?
Grilled cheese sandwich
Jacki Gerstner
What is the make up of your family and where do you live? Please include ages of children and which child has albinism.
My husband Colin and I live in Billings MT and have 4 children. We have 3 boys (Eli-14, Luke-12, and Isaac-10) and adopted our daughter Hope (age 9) from China when she was 2.5 years old. Our oldest and youngest son and our daughter all have albinism.
What does NOAH mean to you?
NOAH is family. NOAH was there for us when we were the new parents with a baby boy who had just been diagnosed. NOAH helped us not feel alone and continues to walk along side us through life as we navigate parenting children with albinism.
Why did you want to be a Parent Liaison?
I absolutely love that I have the opportunity to give back. I will never forget the phone call I got when I was the new scared mom of a 2 month old who had just been diagnosed. Now, I can be the seasoned mom to talk to others and it is such a joy. I can walk with them through all the emotions and uncertainties while giving advice and encouragement. I am a proud mom to 3 children with albinism and am passionate about sharing more about them, albinism, and our experiences all while educating others.
Please share one thing that you wish you knew when you child with albinism was just diagnosed.
Your kids will go on to far exceed what you thought was even possible. Don’t limit them. Know that your sad and scared feelings are VALID, but your children will do amazing things and you will be so proud.
What activities or hobbies do you and your family do for fun?
Living in MT we love the outdoors, camping, hiking, etc as a family. Our kids’ sports schedules also totally keep us busy and we love supporting them in all their activities throughout the year.
What is your favorite candy?
Reese’s Peanut Butter cups or Peanut Butter M& M’s 🙂
Amanda Grant
Coming soon!
Kayla Hamlin
Coming soon!
Courtney Korb
What is the make up of your family and where do you live? Please include ages of children and which child has albinism.
We live in Reston, VA (outside of Washington DC). My husband and I have two kids. Alison, currently 12 going on 25 has albinism. Our son David, 8, does not have albinism.
What does NOAH mean to you?
The meaning of NOAH has changed for us over the years. With our initial diagnosis, NOAH had all the answers. They even had answers to questions we didn’t know we asked! As Alison has grown, we transitioned our needs from information based to people based. Now, NOAH is the foundation of our albinism community. We have friends from all over the country and she is able to connect with kids her own age who just understand.
Why did you want to be a Parent Liaison?
I want to be a resource for families who are going through similar emotions to what we went through.
Please share one thing that you wish you knew when you child with albinism was just diagnosed.
Everyone said she would be fine. I wish I believed them at the time. Now, I know she is fine!
What activities or hobbies do you and your family do for fun?
Alison and I both love to see musicals and shows. We love singing and take advantage of most shows that come to DC. We’ll also make the occasional trip to NY for a good show.
What is your favorite candy?
Twizzlers
Laura Leavell
What is the make up of your family and where do you live? Please include ages of children and which child has albinism.
Chris, Laura, Pearce (12) & Donny (10-with Albinism)
What does NOAH mean to you?
NOAH means family to me. It’s a special group of people who support one another no matter what.
Why did you want to be a Parent Liaison?
I have so much compassion for newly diagnosed families that I wanted to help support them.
Please share one thing that you wish you knew when you child with albinism was just diagnosed.
That the baby stage goes by so fast and to try and enjoy it
What activities or hobbies do you and your family do for fun?
Travel, cook, swim
What is your favorite candy?
M & M’s
Rebekah Leitner
What is the make up of your family and where do you live? Please include ages of children and which child has albinism.
My husband and I have two children. Our son is 11 and our daughter is 7 and has albinism. We live in Montreal, Quebec, Canada.
What does NOAH mean to you?
NOAH means that there is a community surrounding my family and my daughter – allowing her to grow up knowing she’s not alone or the only one who uses a white cane. It is the power of connections and support.
Why did you want to be a Parent Liaison?
When my daughter was first diagnosed, I felt very isolated. There was no one nearby that I knew of that had a child with a visual impairment or with albinism and I longed for someone to share struggles, concerns and achievements. When I found NOAH, I was so thankful to find a community of people who understood what we were going through. Now that my daughter is older, I want to be able to give back and help other parents of newly diagnosed children know they aren’t alone in this journey.
Please share one thing that you wish you knew when you child with albinism was just diagnosed.
There will be challenges and bumps in the road, but she will thrive and be resilient every single step of the way.
What activities or hobbies do you and your family do for fun?
We love to travel, swim, arts and crafts, play different sports and ride ponies!
What is your favorite candy?
Fuzzy peaches
If you were a sandwich, which kind of sandwich would you be?
Earl of Sandwich – holiday turkey
George Madrid
What is the make up of your family and where do you live? Please include ages of children and which child has albinism.
I live in the Boston area with my wife, Jeannine, and twelve-year-old son with albinism, Jules.
What does NOAH mean to you?
NOAH is a wonderful supportive community dedicated to helping each other to deal with the extra challenges that accompany albinism.
Why did you want to be a Parent Liaison?
When my wife and I received our son’s diagnosis, it was talking to a NOAH parent liaison that helped us to relax and move forward.
Please share one thing that you wish you knew when you child with albinism was just diagnosed.
When we received Jules’s diagnosis, I wish we had understood that albinism will not define out lives. It’s one piece of who Jules is, but it’s not who he is.
What activities or hobbies do you and your family do for fun?
We love to travel wherever we can.
What is your favorite candy?
In October, it’s Candy Corn. (Only Brachs will do.) The rest of the year, it’s Hershey’s Kisses.
If you were a sandwich, which kind of sandwich would you be?
Ice cream sandwich
Terri Nigro
Coming soon!
Courtney Porter
What is the make up of your family and where do you live? Please include ages of children and which child has albinism.
My husband Chuck and I have two boys – Rhys (11) has OCA1b and Ryan (7) does not have albinism. We live in Loudoun County, Virginia.
What does NOAH mean to you?
NOAH was an invaluable resource and support group when our son was first diagnosed at 2 months old. They provided us with parent support, information and resources, and connections with other families who have children with albinism.
Why did you want to be a Parent Liaison?
I was excited to become a Parent Liaison now that my son with albinism is older, because NOAH was so helpful for us when our son was first diagnosed and we were navigating the early stages of school, accommodations, and other needs for him. I am eager to give back and share my experiences to help other families navigate through their own journeys.
Please share one thing that you wish you knew when you child with albinism was just diagnosed.
That my son would be okay and thriving!
What activities or hobbies do you and your family do for fun?
Our family enjoys going on bike rides, going to the movies, skiing and snowboarding in the winter, and my boys love playing Fortnite.
What is your favorite candy?
Peanut M&Ms or anything with salted caramel!
Rowda Skinner
What is the make up of your family and where do you live? Please include ages of children and which child has albinism.
I live in Portland Oregon with my husband and 9 year old daughter, who has albinism, and our two cats.
What does NOAH mean to you?
To me NOAH means community. It is a supportive organization made up of supportive people. NOAH is my go to for albinism related resources.supported my family.
Why did you want to be a Parent Liaison?
I wanted to become a parent liason to offer new parents the same support I received when our daughter was diagnosed.
Please share one thing that you wish you knew when you child with albinism was just diagnosed.
I wish I knew that she’d be so much more than her diagnosis, and just to enjoy my baby.
What activities or hobbies do you and your family do for fun?
Our family enjoys movies, art, and snowboarding.
What is your favorite candy?
Reese’s Peanut Butter cups
If you were a sandwich, which kind of sandwich would you be?
Club sandwich
Pamela Tarnawa
Coming soon!
Sarah Venn
What is the make up of your family and where do you live? Please include ages of children and which child has albinism.
My husband, Tad, and I have 4 daughters. Our second daughter, Caroline is 15 and was born with OCA. Clare is 17 and our twins, Audrey and Mary Kate are 13.
What does NOAH mean to you?
NOAH has become like a second family to us! It was NOAH and the people I met thru NOAH that helped me understand albinism when Caroline was born. I met other moms that I understood my fears and worries and I met adults with albinism that showed me what Caroline’s future could be. Caroline has grown up in a community of people that just get it and she has made friendships that are continuing into her teen years.
Why did you want to be a Parent Liaison?
I was so afraid when I learned Caroline had albinism and as she grew older I realized it was the fear of the unknown that made me most afraid. I wanted to help other parents feel less afraid.
Please share one thing that you wish you knew when you child with albinism was just diagnosed.
The acuity numbers are nothing more than numbers! They don’t really tell you how she is going to function in every day life.
What activities or hobbies do you and your family do for fun?
Our family has a wide variety of hobbies! We each have our own hobbies (needlepoint, gardening, running, karate) but love to spend time together as a family at the beach, playing games, and spending time together. Caroline is a pianist and attends an arts high school. She also loves to read and do jigsaw puzzles.
What is your favorite candy?
Heath bar
Megan Younger
Coming soon!