Doing whatever it takes.

Community Advisory Board

The Community Advisory Board of the Mowat-Wilson Syndrome Foundation is a group of parents of children with Mowat-Wilson Syndrome who are committed to sharing their stories and advice.  This group provides guidance for the MWSF Welcome Packet, monthly email newsletter content, MWS research, and the needs of the MWS Community.  Members of the Community Advisory Board are appointed by the Boards of Directors.

Carolina Foresti

Carolina Foresti

Duda’s Mother

I joined the MWS Community Advisory Board. It’s my way to help new families who are starting this journey and are feeling scared, anxious, and unsupported; just like I did. I remember when I found out that Duda had MWS, and when I saw all the pictures of other children, my first thought was, “I am home”. I want to help others feel the same: You found your family, we will support you along your journey.

Jodie Hughes

Jodie Hughes

Jadynne’s Mother

I serve on the MWSF Community Advisory Board because it gives me a way to engage with our community of MWS families and collaborate with other parents. We can work as a team of parents and share our thoughts, ideas, and experiences to push for grants to fund research and help other families who need our advice and support. We talk about ways to help families in need, things that researchers need to consider and perhaps conduct research on, and how we can support other families on this journey. Being a part of the Foundation personally allows me to have a safe place where I can share our experiences with Jadynne and how they can benefit other families who may have similar experiences. Although we in the MWS community see so many similarities with our children, their journeys are so different and can be quite complex. We want to make information and resources available to families at the touch of their fingertips. It’s an honor to be a part of the community advisory board. I don’t take it lightly and I put my entire heart and soul into my position.

Barb Andrews

Barb Andrews

Rylan’s Mother

Life with MWS is not easy, but every day with Rylan makes it worth it! He has taught us so much about life and love and strength. He is our hero and definitely has made us better people! His smile is pure joy and he has a huge personality. Every day is both a gift and an unknown. Rylan amazes us with what he can do and how resilient he is. Our loved ones with MWS are capable of so much and they work so hard to accomplish things that others take for granted. I am so thankful that God chose to give us this special and amazing boy. He is absolutely extraordinary. Never give up hope! Our kids are able to do so much, so keep advocating and being their voice!

Erin Hawthorne

Erin Hawthorne

Declan’s Mother

I have worked as a Pediatric Dental Assistant for 6 years and am now working as a clerical assistant in a legal office.

Declan was born in July 2015 and was diagnosed around 2 months old. There’s not a soul that doesn’t immediately fall in love with him.

I joined the Community Advisory Board in hopes to be a voice for advocating for research, keeping us a close community, and just simply being someone that people felt comfortable coming to if they had questions. A lot of us joined this journey clueless and I hope we can help those who are newly diagnosed get all of the help they need to succeed!

Shelly Clarke

Shelly Clarke

jethro’s Mother

I grew up in New Zealand and South Africa and spent 10 years living in London in my 20s. I met my lovely partner Nick when I returned to New Zealand in early 2002. We have 2 teenage boys Gabriel and Jethro.
I trained as a Shiatsu Therapist when living in London and as a Yoga Instructor after having the boys when working at a college of Natural Therapies. I am passionate about bringing yoga to as many people in my community as I can through yoga classes for teens, special needs, the elderly and a community class on Sundays in the park since COVID.
Because only 2 others have been diagnosed with MWS in New Zealand, I have always reached out to our international community for connection, advice and understanding.
Jethro is a thrill seeker who loves the beach. He is very lucky to have a brother who adores him and loves to entertain him (and so are we!). I am quite honored to be on the MWS Community Advisory Board and love feeling like I am contributing in some small way.

Mallorie Brown

Mallorie Brown

Austin’s Mother

I am the mother of two beautiful children. Amelia is 13 years old and Austin is 3 years old. We received the news that Austin had Mowat Wilson Syndrome when he was only 8 days old. We were overwhelmed because we did not know what to expect. Connecting with other MWS families has been such an amazing part of our journey. The support, stories and love of this group is truly a blessing.
I joined the Community Advisory Board a few years ago. My interest came from wanting to connect with more families, advocate on behalf of Austin, and learn more about MWS. It also allows me to keep up to date on research opportunities and the progress of the MWS Foundation.

Kim Jachim-Mellenthin

Kim Jachim-Mellenthin

Lizzie’s Mother
Jennifer Farrell

Jennifer Farrell

Riley’s Mother
Carrie Avila-Mooney

Carrie Avila-Mooney

Franklyn’s Mother
Dann Hauser

Dann Hauser

Andrew’s Father
Laura Windsor

Laura Windsor

Amanda Rice

Amanda Rice

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