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October is Gaucher Awareness Month

Help others through education of this painful, dibilitating and often fatal disease.

The importance of Gaucher disease awareness and education

October is Gaucher Awareness MonthEarly diagnosis, evaluation and treatment can help save lives and prevent further damage of the skeletal system and organs such as the liver and spleen. In many cases young children with Gaucher disease, Type 1 (the most common form of Gaucher (Go-Shay) disease) may show a reversal of symptoms within the first two years of treatment. Because Gaucher can affect anyone, regardless of ethnicity, age or gender and affects those in the Ashkenazi Jewish population in far greater numbers, most people within the gen- eral population are not aware of the disease. It is true that approximately 1 in 450 Ashkenazi Jews have Gaucher disease and one of the reasons why many are better educated about Gaucher disease.

There are other populations affected by Gaucher, including Hispanics, African Americans and Asians. However, because there are fewer reported cases within these groups, there is not enough information specifically directed to them. After marketing to mostly the Ashkenazi Jewish population for many years, the National Gaucher Foundation (NGF) began reaching out to other "at-risk" groups. Today, our marketing efforts are directed towards the general population, reaching all ethnicities.

Expansion of our educational programs and Gaucher awareness events are one of the National Gaucher Foundation's top priorities. With the advent of an enzyme replacement therapy in 1991 and additional treatments that followed, a better quality of life is possible, not only for those previously diagnosed, but for the newly diagnosed. The key is awareness of the symptoms of Gaucher, early detection, diagnosis and treatment if required. Since some people have only mild cases of Gaucher, they may not require treatment and that is determined by their physician.

Regardless of your ethnicity, age or gender, following these tips may prevent you or a loved one from needless damage and pain and may help save lives. Pay attention to the warning signs of Gaucher disease which include: Fatigue, anemia, easy bruising and bleeding, bone pain and easily fractured bones, osteoporosis, distended stomach due to an enlarged liver and/or spleen and more. Learn more about your family medical history. As so often occurs people's grandparents or their parents may have had Gaucher disease without the next generations knowing anything about it.

How is Gaucher determined?

Both parents must carry the Gaucher gene in order to pass it to their children. If you think you or a loved one has Gaucher disease, it can be detected through a blood test. If there is a family history of Gaucher, or you, your family or friends display some of the above symptoms, ask your doctor about testing.

It is our hope that through continued education and awareness, there will be fewer undiagnosed cases of Gaucher disease. The National Gaucher Foundation wants to reach the undiagnosed or misdiagnosed and help them get the care they deserve. We hope that each of you will join us in promoting awareness of Gaucher disease. Whether it's holding or attending an event, having a conversation, meeting, sharing a Gaucher flyer with someone, every little bit helps to spread the word. Ask us for Gaucher flyers!

Share with us and learn what you can do for Gaucher Awareness Month!

Share with us any "awareness" activities or events in which you are or will be involved. Your activity/event will be posted on the October Gaucher Awareness web pages at and promoted in our newsletter.

These are some of the upcoming Gaucher awareness events in which you, your family, friends and associates can participate.

. "Go For Gaucher" 5K Walk/Run, Sunday, September 29, Mason Mill Park, Decatur, GA. Registration deadline is September 19. Day of event registration is offered. Sponsorships and Program book ads are available. All ages, teams, and individuals welcome.

. 8th Annual Gaucher Online Awareness Auction, October 1-30, 2013. Make a donation to the auction and/or purchase items during this event.

For more information about Gaucher disease, Gaucher Awareness Month, 5K Walk/Run or the Gaucher online awareness auction contact us at 770-934-2910 or 800-504-3189.

Learn what you can do to help promote awareness of Gaucher disease.

*Date of Activity/Event:
*Name of Activity/Event:


List of ideas for companies and individuals to promote awareness of Gaucher disease available.

- Speak with people at your community center, church, synagogue or temple about Gaucher disease.

- For those who live in the Atlanta metropolitan area, attend the "Go For Gaucher" 5K Walk/Run on
September 29, 2013.

- Donate items to the Gaucher Awareness Auction or purchase items from the Auction at

- Give out Gaucher awareness month items such as pens, ear buds, key chains and key lights, flash drives, hats, scarves, pedometers, etc... something to remind people of Gaucher.

- Get a press release about Gaucher disease published in your local, regional or national paper or magazine.

- Give a Gaucher flyer to your pastor, priest or rabbi and discuss Gaucher disease with them.

- Send an NGF eCard from our website to family, friends and business associates.

- Talk to your doctor, friends, neighbors and family about Gaucher and let them know you are helping promote awareness of Gaucher disease.

- Hold a Gaucher awareness garage sale, bake sale or yard sale and donate part of the proceeds to the NGF for education, or promote awareness through flyers and/or signage from the NGF.

- Ask the NGF for flyers or posters to use at your event.

- Hold a walk-a-thon, bike-a-thon, or skate board event in your neighborhood or community center.

- Direct people to the National Gaucher Foundation website at for information and Gaucher disease and awareness month.

- Learn the symptoms of Gaucher disease so that you can discuss it and help others.

- Become a member of the NGF and/or the Gaucher groups discussion list.

- Send the NGF articles and stories for their newsletter and website. The articles should be about you, your family or other loved ones affected by Gaucher disease. There are so many stories about how people have overcome obstacles, how they deal with physical and psychological aspects of the disease, how well they do with treatment and how they live their lives. If you have a story to tell, the NGF publishes a quarterly newsletter and we'd like to hear from you.

- Make a donation to the NGF in honor of or in memory of a loved one.

Fill out the form if you would like to have the NGF send you some Gaucher flyers or NGF brochures.

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Gaucher Flyers
NGF Brochures
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