Cystinosis Newsletter - Cystinosis Research Network

Page 3 The Cystinosis Research Network Fall/Winter 2006
continued from page 2
Development – John Shepperd took on the responsibilities for this committee in the beginning of the year and is
in the process of elevating the processes and protocols via which we raise the necessary funds to meet all of
demands of the organization. In 2006, we set two objectives: a target of $250,000 and a stretch target of
$300,000. We have raised 90% of the target funds to date. We have two major fundraising events on the calendar
and believe we will achieve the target.
Education and Awareness – We continue to place a high degree of emphasis on making the medical professionals
aware of cystinosis. The critical networking and outreach CRN continues to do at these conferences is
invaluable. It is hoped that we can maintain this high level of visibility for 2007. We participated or maintained a
booth at all of these targeted conferences and attended an International Family Conference in 2006:
University of Miami Pediatric Nephrology (March 9 – 14), Miami Beach, Florida
American Society of Pediatric Nephrology and Pediatric Academic Societies (April 30 – May 2)
San Francisco, California
Netherlands Cystinosis Foundation Family Conference (June 30 – July 2)
Genetic Alliance Annual Conference (July 27-29) Bethesda, Maryland
American Society of Nephrology, (November 16-19), San Diego California
Family Support - We have had a lot of success in providing support to a number of individuals from our community.
Support has come in the form of fiscal and moral support.
2007 Searching for A Cure in the Lone Star State Medical and Family Conference – The date has been set.
The city and venue have been selected: July 19-21, 2007, The Hotel Contessa, San Antonio, TX. We are in the
midst of planning the agenda and the necessary logistics. Your 2007 Family Conference Committees:
Host Family John and Kim Shepperd
Co-Chairs Christy Greeley, Marybeth Krummenacker and Pam Woodward
Agenda Christy Greeley, Marybeth Krummenacker, José Morales, and Pam Woodward
Day Care Tonya Wise, Lynn Thomas and Sandy Glaize
Marketing Pam Woodward, Marybeth Krummenacker, Kathleen Harrison, Denise Flechinger, and
Carol Hughes
Speaker/
Advisory Board Christy Greeley, Elva Smith, and Marybeth Krummenacker
Sponsorship Mack Maxwell, Dave Greeley, and José Morales
Welcome/
Registration Frankie McGinnis, Cheri Friend, Melissa Morgan, Karen Gledhill, Paula Shal,
and Lorna Smith
Site Planning John and Kim Shepperd, Pam Woodward, and Dan Julian
Note: Bold and italics denote leads
The committees have been formed and are making good progress. We will be communicating more specifics as
the plans become more firm. We hope to have a strong attendance, so start polishing those cowboy boots and
dusting off those ten gallon hats!
It takes a lot of people working together to make all of this happen. It is true our numbers continue to grow, but
we also have greater and greater needs. There exists a multitude of ways to participate in the search for a cure
for cystinosis, and none are too small. We respectfully ask that all of you seek a way to become engaged and
contribute.
José T. Morales
President