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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CallihanMarshall

Callihan Marshall
NY

My name is Callihan Marshall, and I am the Regional Representative for NY. I found out about PRISMS through my sister with SMS…

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KimWirth

Kim Wirth
LA, MS

My name is Kim Wirth. I am the regional representative for Louisiana and Mississippi. My daughter Evelyn was born in New Orleans in 1999…

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callis18th_square

Remi Robbins
PA

My name is Remi Robbins. I live in King of Prussia Pennsylvania, a few miles west of Philadelphia, with my boyfriend Jordan and our greyhound General. My younger sister Calli…

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Liz & Bill Yates
VA

We are Dr. William and Mrs. Elizabeth Yates (AKA Bill and Liz), parents of our SMSer 32-year-old daughter, Mary (AKA “Puzzle queen”). She is our…

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Kevin Daly
NC

My name is Kevin Daly and I live in Charlotte, NC. My son, Michael, was born in 2001 with a heart defect called Tetrology of Fallot and diagnosed with SMS almost immediately after he was born…

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RhondaFranklin

Rhonda Franklin
SC

I am the proud parent of James Evan Franklin. Evan was born on November 2, 1982. His diagnosis of Smith-Magenis Syndrome did not occur until January of 1990 at the age of 7. Before…

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RandiT

Randi Tanenbaum
NY,NJ

My name is Randi Tanenbaum from Manalapan, NJ.  I am one of the Regional Representatives for New York and New Jersey.  Our daughter Marnie, was… .

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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 Hards
OH, WV

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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Tracie Belcher
WV

My name is Tracie Belcher. My daughter Emily and I live in the mountain state, West Virginia. Emily was born in 1990 and diagnosed with SMS in 2000. We have…

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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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Jill Wood
AL

My name is Jill Wood and we live in North-Central Alabama.  Our son, Kace, was diagnosed with SMS in 2012 just before his second birthday. We were very fortunate to find PRISMS…

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Roberta Higgins
AL

 

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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…

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AbbyBell

Abby Bell
AR

My name is Abby Bell. My son Turner was diagnosed with Smith-Magenis Syndrome when he was three years old in 2016…

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AshtonChermaine

Ashton Chermaine
LA

My name is Ashton Chermaine and I am representing South Louisiana and the Gulf Coast. My child is Krista and she was born in 1989…

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HeatherBoney

Heather Boney
LA

My name is Heather Boney. We live in Lafayette Louisiana. My daughter Jayci is 11 and was diagnosed at 6 months old. We were given…

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CaitlinSeldon

Caitlin Seldon
MI

My name is Caitlin Seldon, and I am the Regional Representative for Michigan. I am an elementary teacher turned stay at home mother for…

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MicheleZdanowski

Michele Zdanowski
MI

My name is Michele Zdanowski, and we have been PRISMS members for nearly 20 years. The first conference we…

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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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DenienRasmussen

Denien Rasmussen
IL

My name is Denien Rasmussen, and I am a Regional Representative for PRISMS, as well as, an SMS…

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Brianna Ryczek
WI

My name is Brianna Ryczek. My sister, Amber Collins, is my connection to SMS. Amber is a beautiful young lady now in her twenties. She is a wonderful aunty to my son and they…

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Natasha Schaller
IA

My name is Natasha Schaller and I live in Winterset, IA, with my husband, Eric Schaller, and our three children, Reese, Charlotte & Levi. Our son, Levi…

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BernadetteHuston

Bernadette Huston
IA, MO, AR, OK

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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Annetta Zidzik
MO, OK, AR

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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AX2A5156

Glen & Kristine Braden
CT

We are Glen and Kristine Braden and live in southern Connecticut.  We got involved in PRISMS after the diagnosis of our adopted son, Tully, when he was 11 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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CarissaLe

Carissa Le
MN, ND, SD

I’m Carissa Le, from Lakeville, MN (30 miles south of the Twin Cities). My daughter, Scarlet, is 11 years old. She was diagnosed at 16 months…

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John Roseborough
KS

My name is John Roseborough and I am the regional representative for Kansas. My daughter Elsie was born in 2012 and was diagnosed at age 3. I have been affiliated with PRISMS since 2016…

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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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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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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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RhondaLowney

Rhonda Lowney
AZ, HI

My name is Rhonda Lowney and I represent Arizona and Nebraska. My daughter Jude was diagnosed at the age of two and I believe I have been a member of PRISMS…

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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)…

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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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Ana Witherspoon
WA

My name is Ana Witherspoon, and I live in Spokane Valley, Washington. I have a younger brother who is diagnosed with SMS. He was born in 2004 and was….

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MarniRolston

Marni Rolston
MT

My name is Marni Rolston, and I live in Bozeman, MT with my husband, Jed Huseby, and our daughter, Ida May (age 14) and our son, Sorin (age 10). Ida May was born in 2005…

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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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LaurieBellet

Laurie Bellet
CA (San Francisco)

I look forward to representing the San Francisco Bay area. My daughter, Ariel, was born in 1995 and…

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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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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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OsmanUmarji

Osman Umarji
CA (Orange County)

I am Osman Umarji and I represent Southern California (Orange County). My son, Malik, is currently 6 and was diagnosed at age 3. We have been affiliated with…

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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 Diego…

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DebbieBrooks

Debbie Brooks
Canada (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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Brandi Wilson
Canada (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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Theresa and Mark Smyth
Canada (QC,NS,NL,NB,PE)

We are Mark and Theresa Smyth and we live in Ottawa, Canada. We have three wonderful children, Thomas is 12, Julianna 10 and Daniel is 8…

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Amanda Downey
Canada (BC,AB,SK,MB)

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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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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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…

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Mick Pearson
United Kingdom

Mick is the regional representative for PRISMS in the United Kingdom. He is also a trustee to the Smith Magenis Syndrome UK Foundation…

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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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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/New Zealand

My name is Cally Bauman and I am a regional representative for both Australia and New Zealand. My daughter, Amélie is 14 years old and was diagnosed…

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Stephanie Hanquez
France

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Virginie Sergent
France

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BelaandAlexander

Bela Kafengauz & Alexander Tzetlin
Russia

We are Bela Kafengauz and Alexander Tzetlin, we live in Moscow and represent PRISMS in Russia. Our eldest daughter Sophia was born in…

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Roxana-Dragan

Roxana Dragan
Romania

My name is Roxana Dragan and I live together with my family in Romania/ Constanta city (Eastern Europe). We are parents for two amazing girls…

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