• Welcome to Our Mothership!
    Welcome to Our Mothership!

    Our website remains at the center of our education and outreach programs.

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  • The International Fabry Community
    The International Fabry Community

    Our fight with Fabry Disease does not have geographic boundaries

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  • Did You Know?
    Did You Know?

    The NFDF provides many Fabry community programs?

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  • Patient Reported Outcomes (Pros) Program
    Patient Reported Outcomes (Pros) Program

    We are learning from the PROs … individuals with Fabry disease!

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  • Recognize and Rescue Everyone
    Recognize and Rescue Everyone

    Please participate in our Fabry disease education and awareness initiatives.

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  • Fabry Family Weekend Camp
    Fabry Family Weekend Camp

    … is in September at Victory Junction, Randleman, NC

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  • In Their Honor
    In Their Honor

    Strength, courage, contribution and hope

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  • Welcome to Our Mothership!
  • The International Fabry Community
  • Did You Know?
  • Patient Reported Outcomes (Pros) Program
  • Recognize and Rescue Everyone
  • Fabry Family Weekend Camp
  • In Their Honor

"Courage isn't always a lion's roar. It is sometimes the heart at the end of the day saying, I will try again tomorrow." -Author Unknown

We wanted to do something special and we could not think of a better time and place to do it. At our Fabry family camp at Victory Junction we try to set aside some of the daily burden of our disease to have fun and enjoy camaraderie and mutual support with others like us. And we do just that at this amazing place! But this year we also took some time to reflect and to pay tribute.

On September 15th, 2012 at 5:00 o’clock in the afternoon we gathered at the Victory Junction Camp amphitheater to celebrate the courageous lives of those who have passed away from Fabry disease. The multi-tiered, semi-circular, grassy seating in the amphitheater provided the perfect setting for our more than 200 attendees to have a few solemn moments together.

As people entered the event we passed out helium-filled Mylar balloons of various colors tethered to small, sand-filled, similarly-colored paper bags. Written on the paper bags were the names of 172 people who have passed away from our disease. The names of our 172 honorees are listed below. The event honored all those who have passed away from Fabry disease but the bags were annotated with names we collected from our community for the ceremony. Many attendees held the balloon that honored one or more of their family members or friends while other attendees held balloons as representatives for families who were not present.

When everyone was seated with their balloons we began the ceremony. First, Jerry Walter welcomed everyone and spoke about the strength, courage, and contribution of those who have passed away. “Often, people don’t realize how strong they have been in their lives because they don’t realize everyone else around them doesn’t feel the same way they do. They don’t know how normal feels.” Next, Jerry and Angela Walter alternated reading aloud the names of each of our 172 honorees. As each name was read a family member or representative brought their balloons forward and placed them in the spacious, grassy area in the front of the seating area.

Soon the many balloons began to take the shape of seven beautiful, multi-colored balloon bouquets and a yellow balloon bouquet centerpiece.  The balloons were round and star shaped. As each balloon was delivered to the front, the attendees were each given a small box to take back to their seats. When all the names were read aloud Jerry led the group in a moment of silence to honor and remember those who have passed away. Smiles and tears emerged as we thought about our loved ones and friends.

Angela Walter then spoke about hope for the future. She spoke about what we have to be thankful for and about a brighter future for families with Fabry disease. She explained about the small boxes given to attendees when they delivered their balloons. Each box contained a Monarch butterfly. Angela spoke about the symbolism of the butterfly release that was about to happen and read a beautiful poem. The poem Angela read is provided below.

To conclude our remembrance event Jerry and Angela led the butterfly release. More than 100 butterflies were released by our families in two waves. The first wave of the butterfly release honored those who have passed away from Fabry disease. The second wave of butterflies was released as a symbol of hope for the future. We all watched as the butterflies emerged slowly, gracefully and beautifully from their temporary homes. As they were released some flew off right away looking for a new home in the inviting new surroundings of the camp while other butterflies spent some time with their liberators and with other attendees of the remembrance event.

It felt good to remember our family members and friends in this special way! We continue to keep them in our thoughts and prayers!

Honorees

 Chuck Kleinschmidt, Ken Walter, Mary Wilson, Leo Stone, Sharon Navarre, Bobby Toby, Dan Flora, Jack Cooper, Jackie Rivers, Danny Ernspiker, Earl Wilkins, Chester "Gunner" Wilkins, Craigg Cordell, Lon Walker, Frank Bohn, Rose Bohn, Jerry Neal, Douglas Lizon, John Strauss, Michael Campbell, Steven Nelson, Robert Nelson, Ron Hill, Steve Hill, Betty Hill, Chuck Monday, Edith Monday, Grace Monday, Roy Monday, Cecil Osborn, Oralia Sierra, John Paladino, Franklin Wallace, John Norsworthy, Richard Norsworthy, Wesley "Jake" Sheppard, Sally Beardsworth, Clanard Bordelon Jr., Ernestina Aguirre, Dennis Milligan, Eudelle Milligan, Alton Milligan, Alan Larese, Pauly Bruskin, Arnold Levy, Arthur Flubacher, Philip Beutelman, Rae Glaze, Ralph Farrens, Ralph Lange, Ray Beiber, Rhoda Gash, Richard Bealand, Richard Bruner, Richard Hay, Dakota Heimsoth, Ricky Mott, David Cruickshank, Robert Gabriel, Robert Hand, Ateo Gulino, Barbara Stevens, Brian Ford, Brian Huff, Bruce Malanga, Bryan Easley, Butch Gabriel, Butch Griffin, Carol Turner, Charley Jansen, Chaz Leibowitz, Clarence Gash, Claude Loden, Cliff Bastin, Clint Desonia, Conchita Feliu, Dan Bishop, Dave Keith, David Bogan, Dean Joplin, Dennis Sakuma, Donald Lapour, Donna Halley, Dorthy Calkin, Doug Loden, Edith Bernhardt, Edna Krasnow, Ellis Linnenbringer, Ernesto Lluesma, Ester Swartz, Everett Gash, Frank Daidone, Frank Finn, Frank Marth, Fred Gash, Gail Noonan, Gary Malanga, Geoff May, George Deatherage, George Lauer, George Whitenack, Gladys Jansen, Grace Betts, Greg Wyatt, Henry Saletnik, Henry Zawada, Isaac Gray, Jack Helland, James Powhatan, Jane Killion, Jeffery Marini, Jerome Mann, Jessica Foggio, Jim Sierman, Joe Snider, Joey Rice Jr, John Beklaris, John Woods Jr, Johnnie Smith, Josephine Henning, Kathryn Mullins, Kenneth Evans, Kenny Bellamy, Ken Schmidt, Larry Teske, Leland Stewart, Leo Levitt, Leta Montgomery, Lewis Betts, Lisa Stone, Lynn Boudreau, Marjorie Smith, Mary Lally, Mary Larese, Michalena Saletnik, Milton Browne, Mitch Inge, Morris Murek, Owen Engen, Pat Hoffman, Paul Beiber, Paul Levy, Robert Jansen, Robert Montgomery, Rolland Duke II, Ron Callahan, Roy Jarrett, Rusty Mullins, Ruth Olson, Samuel Hockeiser, Shirley Gash, Shirley Brackman, Sophy Halper, Steve Mitchell, Sushila Patel, Terry Henning, Thomas Jackson III, Thomas Mott, Thomas Olson, Vito Cantania, Wanda Shaw, Warren Halley, Warren Nichols, Corine Smith, Wendel Snyder, Clifford Heussler, Willa Thurber, Richard Warsoff, William Bowley, William Butler, Paul Walker

The poem Angela read 

A butterfly lights beside us like a sunbeam; And for a brief moment its glory and beauty belong to our world, but then it flies on again. And though we wish it could have stayed, We feel so lucky to have seen it.
 — Author unknown

We have also provided a permanent place on our website to remember those who have passed away from Fabry disease. Please visit the Remembering Family and Friends tab toward the lower right corner of our home page at www.fabrydisease.org. Please send photos and information about your family members and friends who have passed away to This email address is being protected from spambots. You need JavaScript enabled to view it.

We took photos at the remembrance event to enable others to participate in the spirit of the event and to provide a lasting memory for us all. Please enjoy the photos below taken by Diane Lewis of Diane Lewis photography from Raleigh, NC at www.dianelewisphotography.com.

 

                                                    

Fabry Disease Community Announcements

  • The Fabry Community Landscape Handout

    Have you seen The Fabry Community Landscape handout? 

    The Fabry Community Landscape handout written by Jerry Walter provides information that may be helpful to make your journey with Fabry disease easier. 

    To view or print

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  • "My Health Handbook and Emergency Information" Booklet

    We have a great new resource for individuals with Fabry disease!

    We have had many questions and disscussions about what people with Fabry disease should have with them in an emergency. What is the essential

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  • Hooray! We have a color and a ribbon.

    Our official awareness color & ribbon have been a long time coming!

    Over several years various small groups of the Fabry community had many discussions about an official color and an awareness ribbon, mostly on

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Why Early Diagnosis is so Important?

  • Jerry

    Jerry

    • Severe hearing loss/hearing aids: Age 50
    • Heart attack: Age 52
    • Pacemaker/defibrillator implanted: Age 52

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  • Lisa

    Lisa

    • Heart attack: Age 38
    • Stroke: Age 40

     

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  • Becky

    Becky

    • Open heart surgery: Age 44
    • Pacemaker/defibrillator implanted: Age 44

     

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  • Mandy

    Mandy

    • Several transient ischemic attacks in 30s
    • Strokes: Ages 38 and 40

     

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  • Glen

    Glen

    • Kidney failure/dialysis: Age 33
    • Transplant: Age 34

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We Need Your Help

As a IRS 501(c)(3) non-profit support organization we rely on donations from organizations and individuals to provide meaningful support and assistance programs to people/families with Fabry disease. Please give generously!  

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Thank you to our corporate and foundation sponsors as well as our many individual donors. Contributions of all sizes add up to make a tremendous difference.

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Visit our Frequently Asked Questions page to read about common questions related to Fabry disease.

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Founder's
Corner

We continue to make great progress on finding new ways and improving current ways to support our community. We hope our efforts contribute to making your lives better! Founder and President, Jerry Walter

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Join the fight against Fabry disease! Make your voice count to create positive change for people with Fabry disease and our families. One important way to help is to take our surveys for everyone's benefit. 

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The Fabry community is fortunate to have two complimentary support organizations providing a diverse set of programs and services. Join the Fabry Support & Information Group also.

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