Local Family Contacts

When a family receives the diagnosis that their child has Gaucher Disease, feelings of shock, isolation and helplessness are normal reactions. But you are not alone. There are things that you can do.

You can reach out to a family near you who has been through what you are going through. These families have generously offered to lend a listening ear and share about their experience. They are not employees of CGRF or experts. They’re not counselors or medical professionals. They’re people – just like you – whose lives have been affected profoundly by GD2/3.

Deborah & Greg at the 2008 conference with another CGRF parent, Bobbie DeFacci

During our 3 year journey with our son, Joseph, there was no Children’s Gaucher Research Fund. We had no way to contact or reach out to other Gaucher Families. We literally felt that we were the only ones in the whole world with a neuronopathic Gaucher Child. It was a very lonely time for us. Several years after Joseph passed away, a miracle occurred. A man named Greg Macres was on an internet pilgrimage. Greg was looking for other neuronopathic Gaucher Families so he could unite them in a very special way…this special way became the Children’s Gaucher Research Fund. Now, because of the CGRF, no other family will have to choose to do this devastating journey alone. We are proud to be a part of the Children’s Gaucher Family because while Joseph has been gone for over 13 years, our memories of that horribly lonely time are still very vivid. We never want another Gaucher Family to experience that loneliness. Because of the CGRF, they won’t have to. It is a privilege to offer a shoulder to cry on or lend an ear to other families that have (or had) a precious child struggling with Type 2 or Type 3 Gaucher’s Disease. It is more than a privilege, it is an honor.

Bobbie and Tom DeFacci New Lenox, Illinois

Read our story in the Family Stories forum.

International Gaucher Family Contacts
New South Wales, Australia: Martin and Kylie Gregory mkgregory@optusnet.com.au
The Netherlands: Alexia Oostland and Geertjan Timmer alexia@timag.nl

USA Gaucher Family Contacts
California: Jay and Laurell Laws jnllaws@sbcglobal.net
Florida: Suzy Talluto-Ashley sashley2@cfl.rr.com
Georgia: Adrienne Herrell AdrienneHr@aol.com; Robert and Andrea Watson watson1417@comcast.net
Hawaii: Stanton and Kristen Enomoto enomoto.ohana@gmail.com
Illinois: Bobbie DeFacci bdefacci@comcast.neet
Louisiana: Jenny and Andrew Doran andygtr@cox.net
Maryland: Michele and Russell Marsh lakerin@comcast.net
Michigan: Tim and Liz Heinzelman elizabethluke5@yahoo.com
New Mexico: John Caffrey johnnm92@hotmail.com
New York: Shpresa Basha Shpresa101578@yahoo.com
Texas: Carrie and Robert Ostrea ostreafamily@gmail.com
Virginia: Amanda Bower brettbwr@yahoo.com
Washington State: Jeanice St.George (Pozzobon) jeanice73@msn.com

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Why are families
so involved with CGRF?

Imagine having a chronically ill child. Caring for your child becomes your life. Saving your child becomes your mission. That energy, that mission, is then extended in a united effort to raise funds for research — to find a cure. Many of us know a cure may not find our child in time. Many of us have already lost our child. We continue, because we remember those little faces of courage. Our efforts are in honor of their memory. Our efforts will give life to thousands of these children who battle of this disease.

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Three things that you can do

The content on the Children's Gaucher Research Fund Web site is for informational purposes only and should not be used for making medical decisions or as a substitute for speaking with a knowledgeable physician. Information about or links to third parties does not imply endorsement by the Children's Gaucher Research Fund