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

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