How We Got Started

When we created this nonprofit to honor our son’s life and the lives of all children affected by Gaucher Disease, we made the commitment to put all donations toward research. There are no salaries. There are no administrative costs. All costs for postage, printing, web site development, etc. are either donated or paid for by the founders.

Thank you for your interest in the Children’s Gaucher Research Fund. We, the founders of CGRF, began our journey with Gaucher Disease when our son Gregory was diagnosed with Gaucher Disease Type 3 in 1993. When Gregory passed away in 1997, our grief and the incredible outpouring of support from our community catalyzed our commitment — to do everything in our power to ensure no family need suffer the loss of a child to this devastating disease.

Since that early commitment, empowered by the generosity of thousands of people, the Children’s Gaucher Research Fund has raised over $2 million for medical research. Below is the story of how we got here. (For our own personal story, and those of other families affected by Gaucher Disease, please visit the Family Stories section of our website. Gregory’s story is titled “Heaven Birthday.”)

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On April 13, 1997, at 4 years of age, Gregory passed away due to complications in treatment for Gaucher Disease Type 3. We had traveled from our home in California to the University of Minnesota for Gregory to receive a bone marrow transplant. A risky treatment, the transplant was the doctors’ last hope for preventing Gaucher Disease from further spreading through Gregory’s brain. We were devastated when Gregory did not make it through the procedure.

After his passing, we drove the 2,500 miles from Minneapolis, Minnesota, back to our home in California. For those three days, we had time to share our grief and to make plans for his memorial service. When people wanted to make a donation to charity in Gregory’s name, we set up the Gregory Austin Macres Gaucher Research Fund. Initially, we viewed this memorial fund as a way of honoring our son’s life.

We were amazed at the number of donations the fund received. Charity golf tournaments, an article in the San Jose Mercury News, and the continued support of our community allowed us to raise over $100,000 in just two short years. When Gregory’s memorial research fund began to take on a life of its own, we realized the fund did not serve just to honor our son’s life — it honors the life of all children affected by Gaucher Disease.

After contacting the National Gaucher Foundation (NGF) about their intentions for research specific to Type 2 and Type 3 Gaucher Disease, we decided — with NGF’s encouragement — to create a charity dedicated the researching the types of Gaucher Disease that harm children.

In 1999, we created the Children’s Gaucher Research Fund, a 501(c)(3) nonprofit charity, whose mission is to raise funds and unite families to find a cure for Type 2 and Type 3 Gaucher Disease (GD2/3).

Since that time the Children’s Gaucher Research Fund has grown significantly. Other GD2/3 families are now participating by fundraising and offering their support. We currently have over 3,000 people on our mailing list. We have received tremendous support from the National Gaucher Foundation and other Gaucher associations throughout the world. And perhaps most significantly, we have raised over 2 million dollars for medical research.

We are constantly amazed at people’s generosity and willingness to help. A printing company donates the printing of our Helping Hands newsletter. A professional marketing firm designed and developed the newsletter and other materials pro bono. Volunteer technical consultants from Silicon Valley built and maintain this website. All of these people are providing these services free of charge.

These are people who have not experienced our hardship and pain. They have not received the shock of an unexpected diagnosis. They have not watched their child struggle daily with a progressively debilitating disease. And they have not, as some of us have, suffered the pain of losing a child. Yet these individuals have somehow found it in their hearts to offer their precious time — and their precious talent — to help make a difference.

As the founders of the Children’s Gaucher Research fund, we do not take people’s generosity lightly. This is why we have made the important commitment to apply every dollar CGRF receives directly to medical research. There are no salaries. All administrative needs are handled by volunteers or paid for by the founders.

We hope that this commitment will motivate you to adopt the Children’s Gaucher Research Fund as your charity of choice. We see that we have a responsibility. And we fulfill it by applying every precious dollar to medical research.

One of our donors said it best: “Over the years of my life, I have sporadically donated time and money to various causes. I never really found a charity I could adopt, a charity that I could believe in, one that captured my heart. We have all heard the stories about charitable causes where only a small percentage of donated funds are applied to the charity itself. In the past, this has given me cause for concern and has made me cautious. I have been taken by your efforts and by your commitment. I am proud to choose the Children’s Gaucher Research Fund as my charity of choice.”

We would be honored to have you join us in our mission by choosing the Children’s Gaucher Research Fund as your charity of choice. It is our sincere desire that one day you will know that you played a part in saving the lives of thousands of young children.

Here are three ways you can get help:

1. Make a donation
2. Become a champion
3. Join our mailing list

We thank you for your generosity.