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Friday, 06 April 2012 09:56

Do You Know?

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Do you know? The NFDF ...

... held the 2nd annual Charles Kleinschmidt Fabry Family Weekend Camp In September, 2011 at Victory Junction, NC. Families from 17 states and Canada attended camp expense free including paid travel. This is the largest single gathering of people with Fabry disease (~ 100) + family members (another 50) anywhere in the U.S. and possibly the world. Last year's camp included a one day family conference before camp. Do you have children 6 to 16 year old children with Fabry disease? See the Victory Junction tab on our website home page. Contact Jerry at This email address is being protected from spambots. You need JavaScript enabled to view it. if you are interested in attending.

... provides a free, confidential family assistance program through KGA, Inc. The program includes 24/7 telephone counseling and other services for families with Fabry disease. Would you like to speak with someone? See the Family Assistance Program tab on our homepage for a list of services.

... provides free access to many Fabry related journal articles by licensing them for use by our members. We hope this service helps you to learn more about and better understand Fabry disease? See the medical publications tab on our home page. Register on our homepage to become a member.

... provides free membership and does not share member information without permission. Our members include people with Fabry disease, family members, friends , Fabry healthcare providers, and our supporters. Please become a member to help strengthen our voice and our ability to make a difference!

... provides a free periodic e-newsletter to people who subscribe from the link on our homepage. We currently have over 1300 subscribers. Have you and your family members subscribed? Sign up on our home page.

... is implementing several education programs. Because we have treatment available and the hope of additional treatment options soon, we have a R.A.R.E. opportunity to Recognize And Rescue Everyone with Fabry disease. Everyone should have the opportunity to be recognized, diagnosed and offered treatment to enable us to live better and longer lives.

... produced two YouTube videos about symptoms and inheritance. Together, the two nearly identical versions of the symptoms video have been viewed almost 1,400 times in four months. Please share our videos and subscribe to our YouTube channel at www.YouTube.com/TheNFDF. We are working on several other educational videos.

... published a 2012 Fabry disease educational calendar that is great to help families, friends and healthcare providers understand our disease. Please order a calendar. Donations for calendars support NFDF support and assistance programs! Please order a calendar from the Make a Donation link at the upper right corner of our home page.

... is working with members to obtain Governor proclamations in as many states as possible to proclaim April 2012 as Fabry Disease Awareness Month. Please subscribe to our e-newsletter to hear about celebrations and awareness events. Plan your own special event.

... is working on posting Remembrances on our website to honor and remember those who have passed away from Fabry disease. We will also have an event to honor those lost, but not forgotten, later in the year. Please send us a photo and information to honor family members. Please contact Jerry at This email address is being protected from spambots. You need JavaScript enabled to view it.

... is working on an awareness project to help people to better understand the seriousness of our disease. If you have Fabry disease and have had one or more of these major medical events such a heart attack, pacemaker/defibrillator implanted, kidney failure/dialysis, kidney transplant, transient ischemic attack (TIA) or stroke, hearing loss to warrant hearing aids or cochlear implants, etc., please send a digital photo of you and your age at the time of each medical event to This email address is being protected from spambots. You need JavaScript enabled to view it. . We will only publish first names in our awareness publications.

... hosts a Fabry community face book page with over 700 followers from more than 20 countries. Please "Like" our page at www.facebook.com/FabryDisease. We usually post news here first.

... provides free "Fighting Fabry Disease" wristbands. Are you wearing Fabry disease awareness wristbands to spread awareness and show support? See details on our home page.

... changed our website and email addresses. Please use www.fabrydisease.org, This email address is being protected from spambots. You need JavaScript enabled to view it. or This email address is being protected from spambots. You need JavaScript enabled to view it. . At times, you may notice display problems on the website until our rebuild is done soon. Thank you for your patience and understanding!

... needs your help! Please share information about the National Fabry Disease Foundation. All families with Fabry disease should have an opportunity to benefit from National Fabry Disease Foundation support and assistance programs.

... believes we can accomplish so much more working together as a community! Please participate in National Fabry Disease Foundation programs, answer our calls to action as they occur, share information with others, and let us know what you think is important as we do what we can to help people with Fabry disease live better and longer lives!

Thank you for your support to the Fabry community! Please contact me at anytime.

Jerry Walter

Jerry Walter

Founder and President

National Fabry Disease Foundation

Colonel, U.S. Army (Retired)

Last modified on Friday, 13 April 2012 10:52
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