At least 5 to 7 times a week, someone finds Hannah’s blog by searching “Gaucher type 2″ or “Gaucher type 3″ or some variation thereof.   I used to get one to two emails a week from newly diagnosed families while Hannah was still alive.

Since she passed away almost 4 months ago, I received one which came to me from someone at the National Gaucher Foundation.   It is as if people searching out information are unsure if they could reach out to me.

Please, please don’t be afraid to contact me if you are searching out information on Gaucher’s type 2 or 3.  Even though we lost Hannah, my resolve is just as strong to help other families who have children diagnosed with Gaucher’s.   Even if I can’t help you, we have such an amazing community of Gaucher moms and dads who are a wealth of support and information.

If you have a child with this diagnosis, you are not alone.  You just need to reach out to me so I can help you find the support and information you need, whether it is a specialist who understands Gaucher’s or another mom or dad just to reach out and ask questions and cry to.

We, the Gaucher type 2/3 community, may be a small one.  But we are a strong one, and we are a supportive one.   Just let us know you are out there.

Contact me if you want help, support, or a place just to “be” with other Gaucher families.

The Children’s Gaucher Research Fund (CGRF) is currently reviewing research proposals and is considering the funding of between $300,000 and $600,000 in scientific research. The dollar amount of funding will be dependent upon the quality and the compelling nature of the submitted proposals. The CGRF released a “Call for Research” on July 10, 2010, encouraging investigators from around the world to submit scientific research proposals in an effort to find a cure for neuronopathic Gaucher disease. Eleven research proposals were received from scientific laboratories in England, Israel, Italy, The Netherlands, and the United States. Members of our Scientific Advisory Board as well as peer review from investigators outside of the Scientific Advisory Board are currently in the process of reviewing these proposals for potential funding.

In years past the CGRF has released similar “Calls for Research”, however the response in 2010 has far surpassed previous interest. This is a testament to the fact that science is accelerating – more is being learned about these brain diseases in children – and more scientific laboratories have an interest in pursuing avenues that may lead to a cure.

These advances in medical science are compelling, and it gives the CGRF further motivation to continue in our quest to raise funds to support this important research. It is your donations that fund this important research – donations can be made online at www.childrensgaucher.org.  We truly appreciate your continued support.

100% of donations received by the Children’s Gaucher Research Fund go directly to Medical Research.