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Visit and find out more about these children |
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 Our hope is that this Web Site details the research fund, answers the many pertinent questions, and clearly defines our goal; To Find A Cure For Gaucher Disease (Type 2 and Type 3).
We would like to extend to you an invitation to become a part of our organization. However, we thought we would first give you some background on the Children's Gaucher Research Fund. Our son, Gregory, was diagnosed with Type 3 Gaucher disease just prior to his 1st birthday. On April 13, 1997, at 4 years of age, he passed away during a bone marrow transplant at the University of Minnesota. After his passing, we drove 2500 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. Often people donate to a charity in the name of the deceased, so we created the Children's Gaucher Research Fund. Initially, we viewed the research fund as a way of honoring our son's life.
We were amazed at the number of donations following Gregory's memorial service. This was followed by numerous articles, golf tournaments, etc., that allowed us to raise over $100,000. The research fund then took on a life of its own. Other families with children who suffer from Gaucher disease, and families who have lost a child to this disease, are now participating in fund raising. We now view this research fund as a way to honor the lives of all children taken by Gaucher disease. Further, we view this research fund as a way of providing hope for those children still battling Gaucher disease.
We have had numerous questions asking how the Children's Gaucher Research Fund is different from other organizations such as the National Gaucher Foundation in the USA and other Gaucher associations throughout the world. The answer is simple. As we did our initial research, we found so much information pertaining to Type 1, and so little pertaining to Type 2 and Type 3. Furthermore, it became clear that very little research was being done on the neurologic aspect of Gaucher disease. Our role is to raise funds, and provide research specific to brain involvement in Type 2 and Type 3. We have received tremendous support from the National Gaucher Foundation in the USA, and other Gaucher Associations throughout the world. They see our mission as necessary, and have encouraged us to move forward with this very important research.
We currently have over 1,000 donors on our mailing list. We are constantly amazed at people's generosity and willingness to help. We have a printing company who has offered to print the Newsletters, and we have a professional marketing firm who has designed and developed the Newsletter, Information Package, and other misc. materials. We also have a group from Silicon Valley who have developed and are maintaining this Web Site. 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 our child, left wondering why, why me, why my innocent 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.
If these volunteers, who have not experienced our world of pain are willing to fight the battle, then we as parents ought to be willing to fight, and we surely should be on the front lines of the battlefield.
Our goal is to have all families of Type 2 and Type 3 Gaucher disease become a part of the Children's Gaucher Research Fund. We believe that united, we can raise significant money to do research specific to the neuronopathic form of Gaucher disease. If researchers can figure out how Gaucher disease affects the brain there will then be a direction to travel, in an effort to find a cure.
We would be honored to have you join us in this effort. If you are interested, your involvement could be all, or a portion of, the following:
1. Your Story - We would like to have an article telling your story. This would be printed in the Helping Hands Newsletter, and would be on the Web Site.
2.Child's Picture - We would like to have a picture of your child. Your child's picture would be in each issue of the Helping Hands Newsletter and in our information package. It would also accompany your story on the web site.
3. Helping Hands Newsletter -You would provide a list of names and address's of people you would like to have on the mailing list (friends, family, business associates, etc.) When they receive the first "Helping Hands" newsletter they could also receive an introduction letter from you. This will be your choice. Donation envelopes and insert cards can have your child's picture on them. Again, this will be your choice. There will be 4 newsletters per year.
4. Personalization - We can help you personalize any of our materials. For example, in the "Articles and Newsletters section of the research fund's information package there is currently displayed "Heaven Birthday" - which is our families story. This can easily be replaced with your family's story. Stationary can be provided with your child's name and picture on it, etc.
5. Your Community - There may be other opportunities within your community. Often time's companies, Rotary clubs, and other organizations are looking for a charity to sponsor for a period of time, or for a special event. If you identify these opportunities, we will personalize an information package(s), giving you the tools to use in asking that they choose the Children's Gaucher Research Fund as their Charity of Choice. We would be available for any support that you need.
6. Identify Other Type 2 and 3 Families - We would also ask that you would put us in contact with any other families who have children with Type 2 or Type 3 Gaucher disease. This would include both families who are currently providing medical care for their child, and families who have lost a child to Gaucher disease.
7. Flexible - As you can see, we are completely flexible. You will be the one to choose how involved you will be, and to what extent you want to personalize your fund raising efforts. There will be those who want to get involved to a greater extent. They will be welcomed with open arms. We have simply created the infrastructure, allowing you to participate with minimal amount of time and effort.
We also plan to contact those who have the ability to make substantial donations; wealthy individuals, Corporate Foundations, etc. We believe they will take notice and support our cause when they see our four points of difference:
1. 100% of donations go directly to medical 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.
2. This is a grass roots effort, whereby parents of these children, are working together to raise funds for medical research. We as parents are not asking for a handout, we are asking for a "Helping Hand".
3. These are children, who only ask to have a chance at life. As parents, we are willing to fight the battle, and we have decided to be on the front lines of the battlefield.
4. It has been said that the 21st century is the century of the brain. Our research will have overlapping benefits; benefiting a host of adult and childhood diseases, that affect the brain.
However, if we as parents choose to do nothing, children will continue to suffer, and children will continue to die.
We have to tell you, we had some hesitation putting people (everyone we could think of) on our mailing list. We are in essence asking everyone we know to adopt this Research Fund, as his or her "Charity of Choice". However, we simply made a decision.
"The Only Thing Incurable, Is Our Passion."
Our hesitation has been unwarranted. We have been amazed at the response, the generosity, and the encouragement we have received. We believe it will warm your heart when you find how supportive people will be of your efforts.
It would be an honor to have you join us in finding a cure.
 
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Click here to donate
100% of all donations go directly to Gaucher Disease medical research
Children's Gaucher Disease Research Fund
P.O. Box 2123, Granite Bay, California 95746-2123 USA research@childrensgaucher.org
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.
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