Contact a Family

 Would you like to contact another parent/grandparent who understands what you are going through? Listed below are people just waiting to talk with other families who are dealing with PMG. Click on their email address to contact them.

PLEASE NOTE: The families that are listed below are volunteers. They are not affiliated with PMG Awareness Organization. Their thoughts, opinions, or advice are not necessarily those of PMG Awareness Organization. Further, they are not medical experts and should not be relied upon in place of a licensed medical provider. Always consult your medical professional for medical concerns.

United States


Arkansas

Susan Roberts – Northwest Arkansas (Son, TJ, has generalized bilateral PMG)

Arizona

Natalie Fregoso – Tucson, AZ (Daughter, Bilateral PMG)

California

Robin and Rick Hudson – Foothill Ranch, California (Son, Sean, Bilateral Perisylvian PMG)
Sharie Abercrombie – Los Angeles, California (Son has Bilateral Perisylvian PMG)
Danielle Corona – Ridgecrest, California
 
Heather Sanders – San Diego, California
Catherine Jacobson – San Francisco Bay area (son, Bilateral Frontal PMG)

Connecticut

Julie Polk Hasselberger – Sandy Hook, Connecticut

Colorado

Jamie Pohl – Denver, Colorado

Delaware
Victoria Kleczewski – Middleton, DE (son, Nicholas, Bilateral Frontal PMG)

Florida

Catrina Byrge – Jacksonville, Florida (Granddaughter has Bilateral Perisylvian PMG)
Brandy Davis – Jacksonville Florida (Daughter has Bilateral Perisylvian PMG)
Caitlan Bathurst – Jacksonville, Florida
caitlanbathurst@yahoo.com

Georgia
Krista Elema – Roswell (Son has Bilateral Perisylvian PMG)
Kandis Froebe – Gainesville
Wanda Summerville – Temple, GA   (Grandmother to Brooklyn with PMG)

Indiana
Diane Roy – Westfield, Indiana

 


Illinois
Toni Womble – Aurora, IL (chicagoland)
Sammy Ehrhard – Louisville, Kentucky (daughter, unilateral PMG)

Kentucky

Rebecca Dowell – (son, Wyatt )

Maryland
Esther and Benny Hutman – Montgomery County, Maryland

 


Massachusetts
Bethany Carlson – Charlton, MA (Hour from Boston Area.  (son, Brogan, has Perisylvian PMG)

Michigan
Kara Dedert – Grand Rapids, MI (son Calvin has microcephaly, pachygyria, various brain malformations, and PMG (bilateral) mainly in the occipital lobe)
 Kim Throgmartin – (son is 17 months with left side unilateral PMG caused by CMV. Cerebral palsy, developmental delays, and hearing loss)

Minnesota
Randy Lane – Coon Rapids, Minnesota (Son, Bilateral Perisylvian PMG)

 


Missouri
Melanie Rush – St. Louis, Missouri (son, MPPH Syndrome)
Andrea Schreiber – St. Louis, Missouri (Daughter, Bilateral Frontoparietal Polymicrogyria and Macrocephaly)
Jodi Black – 60+ mi north of Kansas City, Missouri
(Daughter,  PMG is her primary diagnosis but does have other brain anomalies as well as heart defect)
Kayla Gibson – Caruthersville, Missouri                 (daughter, bilateral PMG, Spastic Quadriplegia, Cerebral Palsy)

Montana
Nicole Schuler – Baker, Montana

 


New Jersey
Michelle Wojno – Atco, New Jersey
Sue Cleary – Southern New Jersey
Kathleen Marczyk – Absecon (daughter, unilateral right hemisphere PMG)

 


North Carolina
Kelly Powers – North Carolina

 


Ohio
Melissa Holman – Rocky River, Ohio
Jen – Ohio (Daughter, almost 4, bilateral perisylvian PMG)
Allison Mitchell – (son, BPP)
Kimi Bosze – outside of Cleveland, Ohio (Son, Porter, and daughter, Emersyn, both have PMG)

 


Texas

 

Scott and Elizabeth Kent – Dallas, Texas (Daughter, Unilateral Polymicrogyria)
Danielle Shollar – San Marcos, TX
Stephanie Shollar -Houston (North West Area), TX (Grandmother of Kaylee Rae Shollar)
Robert Seaman – Houston, TX (Grandfather of Kaylee Rae, bilateral generalized pmg and epilepsy)
Misty Fairchild – Kaufman Texas (just east of Dallas. Jacob is 6, Bilateral Generalized PMG, epilepsy, g-tube button, cortical vision impairment)
Cynthia Spezia – Fort Worth, TX (But very familiar with medical resources in Houston) daughter, age 3 -BPP as well as other malformations

 


Utah
Nathan & Jessica Pugh – Sandy, UT (son,bilateral perisylvian PMG and arthrogryposis)

Washington
Stacey Klim – Spokane, Washington
Kristie Beniasch – Bellevue, Washington (Son – 3, has bilateral perisylvan PMG, and cerebral palsy
Jennifer Miller – South Seattle (child with BPP)

 


Wisconsin
Jeff Trot – Random Lake, Wisconsin

International


Australia

Deb Hedley – Melbourne, Australia (Grandson has Unilateral Right Sided PMG)
Nadia Mirabilio Olic – Australia
Anna Sinagra – Perth

 


Belgium

Juri Planckaert – (son, bilateral frontoparietal perisylvian PMG and arthrogryposis)
Annelies Van Gysegem – Tervuren (son, bilateral frontoparietal perisylvian PMG and microcephaly)

Brazil

Maria Paula Luz – Goiania/GO, Brazil

Canada

Allison Jones – Vancouver, BC, (son, unilateral perisylvian PMG)
Sammie Monaghan – Halifax Nova Scotia
Rocchina Van Leeuwen – Toronto Ontario (daughter with BPP)
Kristin Pierce – Toronto (son with BFFP)

 


New Zealand

 

Kat – (daughter,is 19 months, she has Aicardi Syndrome, infantile spasms that are very hard to control, bilateral PMG, cortical impairment)

United Kingdom/Ireland

Suriya Khan – Surrey, UK
– Northern Ireland UK (daughter, Áine age 3) extensive PMG affecting the right hemisphere and associated ventriculomegaly,epilepsy,left hemiplegia,global developmental delay and developmental dysplasia of left hip
Nicole Magee – Belfast, Ireland (daughter)
nicole_m11@hotmail.co.uk
Marie Ainsworth – Dublin, Ireland (daughter, 13)
Siobahn Magner – Dublin, Ireland
Wendy and Emmett Hendrick – Co Kildare, Ireland (son, 2002)