Fabry Focus e-newsletter

Transcription

1 Issue December 2014 Fabry Focus e-newsletter December 31, 2014 Greetings! Happy New Year! We hope everyone is doing as well as possible as we put 2014 behind us and welcome a new year of opportunities. Time really goes by quickly, especially as we get older. I turned 60 years old in November and also celebrated 12 years on enzyme replacement therapy. I feel really good about both of these events that I didn't believe I would have a chance to celebrate for many years of my life. I am very happy to still be with you at 60 years old, "relatively" healthy, optimistic about our futures, enjoying life despite the burden of Fabry disease, and continuing to fight a good fight together with you. For many if not most, our prognosis for the future seems much brighter. But, we also recognize that many people in our community struggle on a daily basis to beat this disease. We keep everyone in our thoughts and prayers as we enter the new year. This short issue contains: - "Take Our Surveys" contest winners - "Take Our Surveys" contest update - The Shining Star Campaign update - End of year support Thank you for your continued participation and support! Proudly serving the Fabry Disease community, Jerry Walter Community News "Take Our Surveys" Contest Winners The winners of the August, September and October survey

2 contest drawings are: August U.S. winner:: ($193.00) August Global (non-u.s.) winner: ($193.00) Heather from Utah Bobbi J. from Canada September U.S. winner: Michael from Virginia ($167.00) September Global (non-u.s.) winner: Christina from Denmark ($167.00) October U.S. winner: Sarah from Alabama ($165.00) October Global (non-u.s.) winner: Rachel from England ($165.00) All prizes to date will be sent by the end of January including past prizes that have not yet been sent. Congratulations to everyone and thank you for your support! "Take Our Surveys" Contest Update U.S. and non-u.s. participants please take the November and December surveys as soon as possible by January 15, 2015 to be eligible for the $ prize drawings. Each month a U.S. and a non-u.s. participant can win up to $250 for participating. The monthly prize is just a bonus to add a little excitement to this important information gathering effort. November 2014 Survey Link December 2014 Survey Link Overall, the 2014 survey program has been a tremendous success with great support form the U.S. and global community. We learned we were not able to keep up with the demands of the program along with our other work so we have a lot of follow-up before closing the 2014 survey contest program. The following actions were occur as follows: 1. We'll send all remaining monthly drawing prizes by the end of January We apologize that some are quite overdue.

3 2. We'll soon send reminders to people indicating which of the 12 monthly surveys they missed and still need to complete to be eligible for the end-of-year U.S. and non-u.s. $ prize drawings. 3. After, we close out the 2014 survey program, we'll begin working on survey summaries to publish in the e-newsletter for your use. We intended to do this each month but were unable. 4. We'll start the version of the survey program a little later in the year. Look for details in future e-newsletters. Remember! Everyone who completes all 12 monthly surveys will be entered into the U.S. and Global end-of-year drawings for $ each. Thank you for the awesome support from the entire Fabry community! We appreciate your efforts to help us gather useful information to help the Fabry community and to influence development of our programs and services to serve you better. Good luck! An Essential Ingredient to our Success is You! Shining Star Campaign Be the Brightest star! Thank you to all of the shining stars listed below who have contributed since October 1st, 2015 We are extremely grateful for your generous charitable contributions! The brightest stars for this period are: Champion Level (1,000 or more) - Michelle Jensen Leader level ($500 to $999) - Steve and Diane Rothman Recurring monthly donations: Jamie Hanrahan in honor of the Bohn family Warren Tausch Our many other generous Shining Stars for this period are: Advocate Level Donor ($100 to $499): Dave Boccia

4 Robert and Cheryl Sacks Tracey Gray Hope Snyder in memory Gene Davidson Kim Kondak in memory of John Norsworthy Julie and Ira Littman in honor of Elizabeth and John Lipscomb Will Richmond in honor of those living with Fabry Gary Frohlich in memory of Steve Kertes Antony and Patricia Costa in honor of David Costa Jamie Petkunas Cheryl Barcomb in honor of Michelle Westveer, Zach Barcomb and Kim Michael Andrew Johnston Bruce and Sue Walter Tom Walter Maria Chandra Jeannie Smith Cindy Strange Sherry Tranchemontagne in memory of Richard Bealand Tracy Myatt in memory of Craigg Cordell and in honor of Ty Myatt Monica Moran Christopher Larson Eve Rubell in memory of Reina Rubell Hope Snyder in memory of Reina Rubell Adrienne Heckman in memory of Reina Rubell David and Melanie Wilson in honor of Jerry Walter's 60th birthday Connie Davis Dan Kuusisto Phil Stenersen Cristin Chase Tim Falencik Richard Jones Anonymous via The Benevity Community Impact Fund Anonymous via Just Give Bob Fuller Doris Schappe Thomas Stanziano Julie Cornay Abbe Golding Alla Berman in memory of Reina Rubell Alice Gharibjanians in memory of Reina Rubell Barbara Earley Debra Ruzinsky in memory of Reina Rubell Dorothy Crowell Ellen and Mike Shaler in memory of Reina Rubell Eve Ravell in memory of Reina Rubell Gigi Dean Glen Burke Heather Flater Isabella Wahl Jim Brown Lori Wise Nora Murad in memory of Reina Rubell Suzanne Ferguson Howard Serbin in memory of Reina Rubell Supporter Level Donors (up to $99)

5 Harriett Press in memory of Reina Rubell Barbara Stocker in memory of Reina Rubell Chris Bohn Peter Sackett Sandra Atwood Janel Summers Ruth Shulman in memory of Reina Rubell Susan Boffoli in honor of Bryan Long given as a gift on behalf of Emily Viverette and Mike Wildman Becky Winstell R MacGregor Alexander Lane Thank you all for your tremendous support! Every size contribution adds up to make a huge difference. You have our deepest gratitude for being the brightest star you can be. On behalf of everyone who benefits from our many programs, thank you so much for your generosity! End of year support We still need your help! On December 1st we made a request for help to enable ongoing community support and assistance programs through the end of this year and the beginning of next year until 2015 corporate grants arrive. We received about 50 responses from our community to reach about half our goal! THANK YOU so much to everyone who made a charitable contribution to support this effort. We are very grateful for your support! WE STILL NEED YOUR HELP IF YOU ARE ABLE! We need about 50 more people who are able to make a tax-deductible charitable contribution of between $50 and $100 to reach our goal. You may donate via our donation link below or by mail to the NFDF NC Office, P.O. Box 366, Carrboro, NC Please consider a monthly, quarterly and annual recurring donation and/or an employer matching gift. See these options from the donate button below. Some of our programs have global application and participation. If you are outside the U.S. and wish to make a contribution, the Donate Now button below or on our website home page opens up to a page that also includes a PayPal button that can accept contributions from most countries. On behalf of everyone who benefits from our many programs,

6 thank you so much for your generosity! Until Next Time Thank you all for your participation and support this year! Please contact me anytime at the phone number or address below. Happy New Year! We wish you the very best 2015! Sincerely, Jerry Walter Founder and President National Fabry Disease Foundation Connecticut Ave. N.W. Suite 404 Washington, DC Copyright All Rights Reserved.