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Meet the Parent Liaisons!

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.

Katie BaileyAnne ContantGacia CoronadoSarah Edgerton
Katie BaileyAnne ContantGacia CoronadoSarah Edgerton
Regan GentileJacki GerstnerAmanda GrantKayla Hamlin
Regan GentileJacki GerstnerAmanda GrantKayla Hamlin
Courtney KorbLaura LeavellSam McClungTerri Nigro
Courtney KorbLaura LeavellSam McClungTerri Nigro
Megan PittRowda SkinnerPamela TarnawaEmily Urquhart
Megan PittRowda SkinnerPamela TarnawaEmily Urquhart
Sarah VennMegan Younger
Sarah VennMegan Younger


Meet our Parent Liaisons!

Katie Bailey

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 3 children. Scotlyn is our oldest with albinism, Annie is our middle daughter with albinism, and Huck is our youngest without albinism. Our girls are both in Elementary school and Huck is still home. We live in Alberta, Canada!

What does NOAH mean to you?

NOAH was the anchor I clung to for support and connection in the depths of a newly diagnosed newborn six years ago. Since then, I’ve been so grateful to volunteer speaking to parents going through all the emotions and questions about Albinism.

Why did you want to be a Parent Liaison?

To give back to parents what someone else gave to me

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

I wish I knew the support I would receive and that it wouldn’t always feel so lonely

What activities or hobbies do you and your family do for fun?

We love swimming, riding bikes, and being outside!

What is your favorite candy?

Chewy Gobstoppers!


Anne Contant

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, John, and I live in the western suburbs of Chicago. We have three biological children who are 21, 17, and 13, as well as three children with albinism who are adopted from China, ages 6, 7, and 9.

What does NOAH mean to you?

NOAH has been an amazing support to our family and has enabled us to connect with other families who are walking similar journeys. The relationships we have made and the opportunities our children have had to connect with other children with albinism has helped us see what an invaluable organization and resource NOAH is to families like ours.

Why did you want to be a Parent Liaison?

I have benefited greatly from others who have come alongside me and offered encouragement and support in situations where I have felt overwhelmed and alone. As a Parent Liaison, I would love to be able to offer this same support to others who are welcoming children with albinism into their families.

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

As an adoptive family, we were aware of our children’s diagnoses before we met them. This afforded us the opportunity to prepare and educate ourselves as we waited to welcome them home. If I could whisper some advice to myself during the first year of parenting an adopted child with albinism, I would have encourage myself to enjoy more and worry less.

What activities or hobbies do you and your family do for fun?

We have a large family with a wide span of ages, so it’s usually hard to find something we all enjoy doing; however, the one thing we can all agree on is going to the beach!

What is your favorite candy?

Peanut M&Ms

If you were a sandwich, which kind of sandwich would you be?

BLT


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.

Hello from Wisconsin!

Our family of four consists of myself, my husband Travis, our eldest son Arek (5) who does not have albinism, and our youngest son Matias ‘Mati’ (3) with albinism.

What does NOAH mean to you?

NOAH is an extension of our support network. It is a place to ask questions, seek support, and find others in the same camp. The first NOAH event we attended was surreal. For the first time since having our son, we weren’t expected to be the experts on our son’s condition, no one stared or asked uncomfortable questions, and we were surrounded by others who not only understood his needs, but offered useful tips and advice.

Why did you want to be a Parent Liaison?

I remember the initial feelings that came with a diagnosis of albinism and how lost and overwhelmed I felt. The parent liaison I connected with was able to share a similar experience, helping me feel less isolated. I want to be able to pay it forward. 

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

Aside from “Your baby will be just fine…” I also wish someone would have told me that the initial grief you feel is normal and okay, and that it will pass. It is okay to feel those moments of heartache. They will become fewer and fewer, and your moments of joy will far surpass them.

What activities or hobbies do you and your family do for fun?

We love gardening, plants, and spending time outside! Wisconsin has pretty long winters, so we thoroughly take advantage of playing in the snow, sledding, and skiing when we can.

What is your favorite candy?

I am a big fan of Coffee Crisp. I have only been able to find it in Canada, but it’s been my favorite since I was a kid!


Sarah Edgerton

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 David and I live in Alaska with our 3 kids. Lyla (8)Lane (7) and Landon (4). Lyla and Lane both have albinism.

What does NOAH mean to you?

NOAH means that we have additional resources and don’t have to figure it all out alone. NOAH is a family. A warm, kind and fun family. NOAH has meant that our family gets to make connections with other families who understand some of the struggles we face.

Why did you want to be a Parent Liaison?

I wanted to be a Parent Liaison so that I could help another parent know it’s going to be ok. I want a parent to know that these amazing kids will do more than the Doctors say they will.

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

I wish I knew that the acuity number actually isn’t important. I spent a lot of time wanting to know a number and the reality is that it it just that. A NUMBER. Snuggle and love that baby and HAVE FUN.

What activities or hobbies do you and your family do for fun?

Ride 4-wheelers (yes the big kids drive), swim, dance, play games, do ninja courses, craft, do science experiments and play music!

What is your favorite candy?

Twin Snakes!


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.

Regan and Mike have three children, ages 7, 5 and 2. Her oldest daughter, has albinism.

What does NOAH mean to you?

NOAH is a source of support and community for Regan and her family. Her daughter always looks forward to attending local and national events and being around other people with albinism.

Why did you want to be a Parent Liaison?

I still appreciate the support my parent liaison provided me and my family when my daughter was diagnosed. I wanted to make sure new families felt the same way upon their child’s diagnosis. It is wonderful to make new connections and welcome new families into the NOAH family.

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

That everything would be okay!

What activities or hobbies do you and your family do for fun?

Ride our bikes and go to the park!

What is your favorite candy?

Three Musketeers


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.

Our family of 6 lives in Billings, MT. My husband Colin and I have been married for 12 years and we have 4 children. We had 3 biological sons Elijah (11), Luke (9), and Isaac (7). We adopted our daughter Hope (6) from China 3 years ago. Elijah, Isaac and Hope all were born with albinism.

What does NOAH mean to you?

NOAH has been a wonderful source of comfort, advice and encouragement. I first found NOAH when my oldest was first diagnosed. We were scared and the unknown was so daunting. Now, many years later, we are passionate about sharing more about albinism and love being a part of the NOAH community.

Why did you want to be a Parent Liaison?

I will never forget how it felt when my oldest was diagnosed- the feelings of fear and worry. When a NOAH representative called me, we talked honestly and openly and she assured me that my son would be just fine. That provided such comfort during a scary time. After having 3 children with albinism, I have become passionate about spreading awareness and educating others about albinism and one way I could do that is by becoming a Parent Liaison. I knew that I could provide comfort and encouragement to another new parent just like someone else gave me.

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

I wish I knew that even though life may be a little different, it will be more beautiful and amazing than I could have ever imagined and they would still go on to do big things!

What activities or hobbies do you and your family do for fun?

Our family loves adventuring the great outdoors in our beautiful state of Montana. We love camping, hiking, fishing, and exploring! The kids keep us busy with their sports and activities and we love traveling when we can! We live in the same town as all of our extended family and spend a lot of time with them!

What is your favorite candy?

Reese’s Peanut Butter Cups


Amanda Grant

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, David, and I live just outside of Toronto in Ontario, Canada. We have one child, Noah, who is 5 and who has albinism.

What does NOAH mean to you?

NOAH means support, understanding, and care to me. This organization was a key component in how my family acclimatized to my son’s diagnosis.

Why did you want to be a Parent Liaison?

When my son was first diagnosed, at the age of 8 months, I felt confused and overwhelmed. Speaking with my own Parent Liaison at that time helped me to understand albinism in a way that nothing my doctor or the internet told me could. She helped me to see that there would be challenges but that it was going to be ok. I am forever grateful for her and am now grateful for the opportunity to help other families on their own journeys.

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

I wish I knew that there were days coming when I wouldn’t think about, or worry about, albinism all of the time. I wish I knew that it would fade to the back drop so much of the time and that it would not define my son or our family in the slightest.

What activities or hobbies do you and your family do for fun?

We love to go for walks, read, do crafts, and build Lego. In the summer, we love to spend time at my dad’s cottage, playing in the water and boating. We have also just started to learn new physical activities like ice skating, biking, and roller blading!

What is your favorite candy?

sour keys or chocolate 🙂


Kayla Hamlin

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 Central Ohio with my husband and 2 children. My son is 6 years old and has albinism, my daughter is 3 and does not have albinism.

What does NOAH mean to you?

NOAH means so much to me and my family. They helped us from the very beginning they provided us a sense of family and community that helped my husband and I understand albinism, accept the diagnosis, process all the information and not feel alone.

Why did you want to be a Parent Liaison?

I wanted to be able to share my knowledge and information on becoming a new mom to a son with albinism with others. I wanted to be a person that others could turn to and to help them navigate this time and let them know that they are not alone.

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

more about what he could actually see and what his vision was like/would be

What activities or hobbies do you and your family do for fun?

We like to do outside activities, bike, go for walks, swim, watch movies and play games.

What is your favorite candy?

My favorite candy is dark chocolate peanut butter cups.


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.

My husband and I have two kids. Alison is 9 and has albinism. David is 5 and does not have albinism.

What does NOAH mean to you?

NOAH is a place where my family can connect with others who have and are going through the same or similar albinism journeys. A place to learn and grow from people who have similar struggles. A place to celebrate all the accomplishments that our little people have made in their short lives and a place to see all they will one day accomplish.

Why did you want to be a Parent Liaison?

I want to be able to give back to NOAH and the NOAH community just as they have given me and my family over the years.

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

People said it all the time but I wish I would have/could have listened…. “Everything will be ok.” Those people were right and I couldn’t see it then but I sure see it now!

What activities or hobbies do you and your family do for fun?

We like to be silly and have fun out in the community.

What is your favorite candy?

Hershey Kisses or Starburst Fav Reds!

If you were a sandwich, which kind of sandwich would you be?

Peanut Butter and Jelly (Creamy PB and Grape Jelly)


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.

My husband and I live in Dallas, Texas with our two boys who are 9 and 7 years old. Our 7 year old son has albinism.

What does NOAH mean to you?

NOAH means family to me. From day one they have welcomed and supported my family.

Why did you want to be a Parent Liaison?

I am passionate about being a Parent Liaison because my own Parent Liaison helped me tremendously in different ways when my son was little.

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

I wish I knew that he will have plenty of friends and lead a very full life.

What activities or hobbies do you and your family do for fun?

Our family loves to travel and go camping!!

What is your favorite candy?

Fireballs


Sam McClung

What is the make up of your family and where do you live? Please include ages of children and which child has albinism.

My wife and I have been married for over 15 years. We have three sons, our oldest Brack Is seven, he has albinism. Our middle son, Zeke is 5 years old and our youngest Luke is over a year old. Zeke and Luke do not have albinism. We live in southern West Virginia.

What does NOAH mean to you?

NOAH means a lot of things, but most importantly to me, it is a community. We have a safe place to learn and grow, while dealing with the challenges of albinism. It means that we are not alone in this journey.

Why did you want to be a Parent Liaison?

I want to be able to comfort and encourage other parents that are scared. To be able to tell them that they are not alone, and hope to provide correct information that will encourage them.

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

That he’s going to be okay, and this journey is actually going to make him and you stronger.

What activities or hobbies do you and your family do for fun?

We are very active in our church and youth sports. We frequently will take hikes in the woods with our dog.

If you were a sandwich, which kind of sandwich would you be?

A hot dog with chili and ketchup with slaw on the side. By the way, a hot dog is a sandwich.


Terri Nigro

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, David, and I live in Phoenix, Arizona and have 3 children – Luke (11), Nora (9), and Drew (7). Nora is our only girl and only child with albinism.

What does NOAH mean to you?

From the moment we connected with NOAH when Nora was diagnosed at 1 week old, I knew we had people in our corner to support us. NOAH has not only provided support and education, but has also become an extended family to us and to our daughter. The friends we have met through NOAH help answer questions and give their own experiences, so that we are never alone on this journey.

Why did you want to be a Parent Liaison?

I love being able to share my experiences and bring a little peace and reassurance to new parents. It’s great to be able to help families find resources and connections in their community.

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

Albinism will become a smaller part of her (and your) life than you thought at first, and the knowledge & friendships gained through NOAH will make you the “albinism expert” in your life.

What activities or hobbies do you and your family do for fun?

Hiking, swimming, reading, cooking & baking.

What is your favorite candy?

Sour Patch Kids Watermelon


Megan Pitt

What is the make up of your family and where do you live? Please include ages of children and which child has albinism.

I am married to my Husband Andrew and we have two children. Ernie (7YRS) PWA and Benjamin (5YRS). We live in the Western New York area.

What does NOAH mean to you?

NOAH has been the greatest resource and meaning of connection since our son Ernie was diagnosed with Albinism as an infant.

Why did you want to be a Parent Liaison?

When my son was first diagnosed with Albinism I remember feelings very overwhelmed and left with so many questions our doctors just did not have answers for. I had the privilege of connecting with a parent liaison who normalized my experience and gave me a real life perspective. It has been by far the greatest resource!

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

His Albinism will not impact him from doing everything all the other kiddos are doing.

What activities or hobbies do you and your family do for fun?

Our family loves to swim, ride bikes, read and explore new places!!! We also love a good snow storm!

What is your favorite candy?

Dark Chocolate Sponge Candy (this is a native WNY candy)


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 have a husband and six year old daughter. We live in the suburbs of Portland, Oregon.

What does NOAH mean to you?

NOAH has meant having a resource to turn to when we have questions. It’s meant a community that understands us and our child’s unique needs.

Why did you want to be a Parent Liaison?

I want to be a Parent Liaison to support others the same way our family has been.

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

That she will thrive despite the obstacles.

What activities or hobbies do you and your family do for fun?

We enjoy hiking, arts and crafts, music, and movies.

What is your favorite candy?

Peanut Butter M&Ms

If you were a sandwich, which kind of sandwich would you be?

Club Sandwich


Pamela Tarnawa

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 three children. Our daughter is 9, our middle son is 6 and has ocular albinism and youngest son is 2. We live in western Massachusetts. We have a orange tabby cat and a golden doodle. I am the youngest of 6 children (4 boys and 2 girls). Two of my brothers also have ocular albinism, though it was never acknowledged as such when we were growing up.

What does NOAH mean to you?

We didn’t not get involved with NOAH early because we didn’t feel that we “belonged” because our son has pigment and does not look like other children with albinism. However, the events that I have participated in recently have filled a long overdue need to be mutually understood and to hear other parents talk about similar (if not the exact same) experiences that we have struggled with. Friends and sometimes family cannot relate to the experience of raising a child with low vision.

Why did you want to be a Parent Liaison?

When my son was 3, I made a career change to become a Teacher of Students with Visual Impairments for infants and toddlers. I love my career now and truly feel that I make a difference. My purpose is to support parents during a time of so much unknown and in their search to support their child in a way they never imagined. Being a parent liaison feels like an important and vital extension of that purpose.

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

The hardest part for me was that my son could not make eye contact with me. I was grieving the phase that my daughter had when she would gaze into my eyes like it was the first time she saw me, every time. I wish someone had explained that he would get better at controlling his nystagmus and he would make eye contact with me in his own way.

What activities or hobbies do you and your family do for fun?

We love to play games, read books together. make puzzles, and watch movies. We love Harry Potter. I love Friends and Starbucks!

What is your favorite candy?

Dark chocolate truffles


Emily Urquhart

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 Kitchener, Ontario, Canada with my husband, and our two children. Our daughter, 10, has albinism, and our son, 6, does not.

What does NOAH mean to you?

NOAH means belonging. It is both a social and resource connection for our family. We are all grateful to be part of the NOAH community.

Why did you want to be a Parent Liaison?

I believe in the power of storytelling, which is a lot of what we do as Parent Liaisons. We offer our stories and we listen to the stories that the new parents tell us. I knew this was something I wanted to do as soon as I learned about the program and feel incredibly honoured to have connected in this way with so many new parents.

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

You learn to be a parent, and, more specifically, a parent of a child with albinism. You aren’t born an expert the moment your child arrives! Put another way: Don’t let anyone make you feel as if you should be an instant expert.

What activities or hobbies do you and your family do for fun?

We go on a back country canoe trip every year, and we like to skate and ski in the winter. All four of us are major audiobook fans which means that sometimes you can hear a different story being read aloud in every room of our house.

What is your favorite candy?

Salted dark chocolate! A bonus is that my children do not like this treat.


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 and I live in South Carolina with our 4 daughters ages 14, 12, and 10 year old twins. Our 12 year old, Caroline, has albinism.

What does NOAH mean to you?

NOAH is important to me because it means my daughter is growing up knowing other people with albinism.

Why did you want to be a Parent Liaison?

I had so many fears about my daughter’s future when she was born with albinism. As I got to know the people in NOAH so many of my fears disappeared. I wanted to be able to take those fears away from other new parents that were starting a similar journey.

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

It is the fear of the unknown that is the scariest part of the diagnosis and as my daughter got older she took so many of those fears away. Also, sun protection is important and beneficial for your whole family!

What activities or hobbies do you and your family do for fun?

I enjoy needlepoint and cross stitching. Our 4 daughters all have unique interests so we enjoy activities that involve those activities. Our daughters are active in cross country, music, and art. We also love spending time on the lake and with our three dogs (also girls!)

What is your favorite candy?

Heath Bars


Megan Younger

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 Georgetown, IN. I’m a stay at home Mom to three awesome kiddos. Theo (5) and Savannah (2) are diagnosed with OCA1B, and their big brother Elijah (8) does not have albinism.

What does NOAH mean to you?

NOAH means a community of parents and adults who can understand the struggles and celebrate the victories of my two children with albinism. It’s also a community that my children can grow up in knowing they’re not alone and have a sense of belonging with their uniqueness.

Why did you want to be a Parent Liaison?

I wanted to provide comfort, guidance and advice to a newly diagnosed parent with my experiences raising children with albinism.

Please share one thing that you wish you knew when you child with albinism was just diagnosed.

That he would be able to do anything his big brother was able to do and sometimes do it even better.

What activities or hobbies do you and your family do for fun?

Our family loves camping and motorsports.

What is your favorite candy?

Reese’s