Get Connected In Your Area

PRISMS is proud to provide our Regional Representatives as resources for those affected by Smith-Magenis syndrome (SMS). Each representative is a family member to someone with SMS and has volunteered to serve the SMS community by providing guidance for accessing information and serving as an additional connection for families to PRISMS and our many programs and services. Additionally, each Regional Representative assists in organization local meet-ups providing opportunities for families to connect and develop life-long relationships.

Remember, each Regional Representative is a volunteer. You may find it takes some time for them to respond back to you. For more immediate assistance, please contact PRISMS directly at info@prisms.org.

Find your Regional Representative below and reach out today to to get connected!

Interested in serving as a Regional Representative?

We are looking to grow our network with individuals willing to serve the SMS community as a resource.

Complete A Volunteer Form Today

leahbaigell

Leah Baigell
CT, RI, MA, VT, NH, ME

My name is Leah Baigell. I live in Massachusetts and represent PRISMS as a Regional Representative covering Connecticut, Maine, Massachusetts, New 

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Judy Bogdan
NY

My name is Judy Bogden, and I am the Regional Representative for NY. I found out about PRISMS through my niece who had a son

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KevinOConnor

Kevin O’Connor
IL

My name is Kevin O’Connor, and I am a Regional Representative for Illinois. My son, Deane is 27

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Denien Rasmussen
IL

My name is Denien Rasmussen and I am a Regional Representative for PRISMS as well as a SMS mom and PRISMS Board Member. The regional rep…

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BrookeWidmer

Brooke Widmer
IN

My name is Brooke Widmer. My son Judah was diagnosed with SMS in 2013 when he was 18 months old

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Jean Bishop
KY, TN, MS, LA

My name is Jean Marie. I live in Louisville, KY. I am a single mother of an amazing SMSer, Nico. Nico was born in 2007 and diagnosed with SMS in 2008. I…

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Milissa Pelonero
PA

My name is Milissa Pelonero. I am the PRISMS Regional Representative for Pennsylvania. I live in Collegeville which is about forty five minutes North

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Ilse Ciprich
NJ, DE

My name is ILSE Ciprich, and I am a representative for NJ and DE. I have been a member of PRISMS for about 15 years. My son

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Mary Hards
OH, WV, MI

My name is Mary Hards.  I have been a member of PRISMS for the past 8 years. I found out that my son had Smith Magenis Syndrome when he was 4

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Brianna Collins
WI, IA

My name is Brianna Collins. My sister Amber Collins is my connection to SMS. Unbelievably, she is turning 18 this August. She is a wonderful aunty to

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MelissaHaley

Melissa Haley
ND, SD, MN

My name is Melissa Haley. I have three sons, and my son with SMS is Emmitt. He is now 13 years old...

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Heidi Graf
ND, SD, MN

I am mother to Liam, who is now 17. A big celebration is just around the corner as we look forward to celebrating Liam’s 18th birthday on

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Annetta Zidzik
MO, OK, AR, KS

My name is Annetta Zidzik, and I am a Regional Representative for MO, OK, AR, and KS. I have been a PRISMS member for 4 years. I live…

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BernadetteHuston

Bernadette Huston
MO, OK, AR, KS

My name is Bernadette Huston. My husband, Percy Huston, is currently on the PRISMS Board. Our daughter with SMS, Jacqueline, turned 27 in 2018…

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Alejandro and Delma Aguilar
NM

My name is Alejandro and my wife is Delma. We have three girls: Delilah (our 9 year old SMSer), Micaela (7 years old), and Sarai (3 years old). We…

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PattyLoyer

Patty Loyer
AZ, NE

My name is Patty Loyer. I moved to AZ from NC in 1996. My son Joey, 17 years old, was diagnosed with SMS at 10 months old

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Jennifer Klump
OR, ID, NV

My name is Jennifer Klump. I live in Aloha, a suburb of Portland, Oregon, and represent families in Oregon, Idaho, and Nevada. I have been a member…

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Eric and Kim Hoffman
CO, WY, UT

We are the Hoffmans. Eric, Kim and Lynette “Nettie”. We live in a northern suburb of Denver Colorado. We are Regional Reps for CO, WY and UT…

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MaureenMonroe

Maureen Monroe
WA, MT

My name is Maureen Monroe, and I live in Bellingham, Washington. My son, Jim, is 29 years old and was diagnosed in July 2012 at…

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Heather Eberlein
WA, MT

My name is Heather Eberlein and I am a Regional Representative for WA and MT. I live in Spokane with my husband…

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Kevin Daly
NC, SC

 

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Mary Daly
NC, SC

 

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AllisonStephanouk

Allison Stephanouk
GA

My name is Allison Stephanouk. My daughter with SMS is Natalie and she is 7 years old.  We received her diagnosis when she was two weeks old. I joined PRISMS shortly after…

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AllisonLeatzow

Allison Leatzow
FL

My name is Allison Leatzow, and I am the Regional Representative for FL. My son Andrew was diagnosed in Fall of 2013 with the mutation version of SMS…

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Mary Beall
TX

Hi, I’m Mary Beall, mother to Laura who has SMS. We are in Texas. Laura was born in 1985, and we got a diagnosis when she was 12. PRISMS…

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Jennifer Comford
TX

My name is Jennifer Comford, and I represent Texas. I have a daughter Caroline, age 18, who was diagnosed with Smith-Magenis Syndrome at 15…

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Charlene Liao
CA (Palo Alto)

I am Charlene Liao, Ph.D. training in molecular biology and immunology. I live in San Francisco Bay Area in Northern California. I have been…

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Diane Erth
CA (San Diego)

My name is Diane Erth, and I am the San Diego Regional Rep for PRISMS as well as a newly appointed PRISMS Board Member. I live in San…

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TrevorGritman

Trevor Gritman
CA (Lakeside)

My name is Trevor Gritman. My son Boston is 7 years old and was diagnosed with SMS at 10 months old. We have been affiliated with PRISMS for about 6 years, shortly after his diagnosis…

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Cheryl Huber
CA (Victorville)

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Amanda Downey
Canada (Fort McMurray, AB)

My name is Amanda Downey and I live in Fort McMurray, Alberta, Canada. I am a PRISMS Regional  Representative for Canada. My husband and I…

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Brandi Wilson
Canada (Sault Saint Marie, ON)

My name is Brandi Wilson, I’m mom to three, Sid (11), Lilli (10, with SMS) and Jack (9). I am married to my high school sweetheart, we’ve been together…

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DebbieBrooks

Debbie Brooks
Canada (Windsor, ON)

My name is Debbie Brooks. I am a teacher and a mother of two girls. My younger daughter was diagnosed with SMS in 2016, just before her 14th birthday. As soon as I received my daughter’s diagnosis, I read everything I could find about SMS… 

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Maria Elena Carrancedo
Mexico

Hi my name is Maria Elena Carrancedo.  I’m the regional representative of Mexico. I have been a member of PRISMS for around 10 years. I…

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Sheila Herndandez-Vale
Puerto Rico

Hello! My name is Sheila Hernandez and I am happy to be your Regional Representative for  Puerto Rico and Caribbean, also Spanish communities and…

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Eliane Barros
Brazil

We are a Family from Brazil, specifically Rio de Janeiro. My name is Eliane and I’m Lucas’ mother. Lucas has a sister, Barbara, and a…

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CallyBauman

Cally Bauman
Australia

My name is Cally Bauman. My daughter Amélie is 12 years old. She was diagnosed with SMS via the FISH test when she was 3.5 years old …

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Sabrina Bisiani
Italy

My name is Sabrina Bisiani. I live in Italy and I’m the President of the Smith Magenis Italia Association. Prisms was my first contact at the moment of…

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Virginie Sergent
France

 

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Stephanie Hanquez
France

 

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Alexander & Bela Tzetlin
Russia

 

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