2007 CRN Conference Sets New Records "Deep In the Heart of Texas"

Children and Adults with Cystinosis at the 2007 CRN Family Conference in San Antonio, TX

by Christy Greeley

“Searching for a cure….Deep in the Heart of Texas” - The 2007 Cystinosis Research Network Family (CRN) Conference was held July 19-21 in San Antonio, Texas. Prior to the start of the family conference, the CRN Scientific Review Board convened to review this year’s collection of grant proposal submissions on July 18, 2007. The Cystinosis Research Network is dedicated to supporting and advocating research to help achieve its vision of the discovery of improved treatments and ultimately a cure for cystinosis. CRN currently supports six research grants in the U.S. and Europe totaling over half a million dollars in committed research funding. The CRN Executive Board is scheduled to review the recommendations of the Scientific Review Board in the coming weeks and make its funding decisions for new grants. An announcement will be made in the month of August.

Several important announcements were made during the conference, including:

Governance--Successful transition of CRN leadership as new Executive Committee members were elected at annual Board of Directors meeting:

National Institutes of Health Cystinosis Fellowship --CRN announced it will establish and financially support a three year clinical and research fellowship under the direction of Dr. Bill Gahl at the National Institutes of Health in 2008.

International Pediatric Nephrology Conference --CRN announced it has been designated as the lead non-profit organization for the 2010 International Pediatric Nephrology Conference in New York City, which will include major sections focusing on cystinosis. The conference being organized under the leadership of Dr. Rick Kaskel.

Future Family Conferences--Future CRN family conference sites were named, including:

The hugely successful family conference included the following highlights:

Attendance--Record attendance of over 300 family members, physicians, researchers, and professionals.

Research Studies--· Two cystinosis research studies were available for participation and were conducted concurrently with the Family Conference:

“Could you please pass on our thanks and gratitude to all those family members who took the time (and pain!) to donate blood samples for our research. We feel that we have generated an extremely important resource, not only for our research projects, but also other researchers wishing to collaborate and make use of this sample bank.”-- Dr. Katy Freed

Motivational Speaker --Shad Ireland, the first dialysis patient to ever compete in and complete an ironman triathalon, kicked off the proceedings by sharing his inspirational story of taking charge of our own destiny as patients and family members of those with chronic health conditions.

Innovative Poster Session --An innovative poster session format was developed and conducted which showcased a mix of science, medicine, and advocacy group and patient experiences and provided and an interactive experience for both family and professional attendees. Presenters were able to showcase their research, clinical experiences, advocacy group updates, and real patient and family experiences through poster presentations and other forms of display. Participation by the conference participants was high as the format created the opportunity for families to dialog with the representatives on a personal level.

Orthotics --Families were afforded the opportunity to receive free orthotics assessment and fitting. This was possible as a result of the compassion and generosity of Dr. David Ivey, a family practice chiropractor from South Carolina.

Medical Panel-– The Medical Panel and stage specific workshop sessions enabled participants to directly interact with the world’s experts on cystinosis. The questions covered the entire spectrum of cystinosis: fundamental understanding of the disease, current available treatments, on-going research studies and what potential breakthroughs we might expect in the future.

Personal Support Network -- Professional and family relationships were formed and strengthened. The following excerpt comes from a thank-you note CRN received from one of the families who joined us in San Antonio summarizes the emotions we all felt as we left Texas:

“The conference enables us to feel “normal” and it helps talking to doctors, families, and friends and learn of their everyday situations. It is a breath of fresh air to be around our “family”; others who know and have gone through all we have certainly helps us regroup and come up with new ideas to better our children…I don’t think we can ever put into words the info and experience we take from the conferences and how enlightening it is for our family. Just know that without CRN, we don’t think we’d be where we are today.”

For all those who were not able to attend, you were missed! All of the presentations and material covered during the conference will be available on our website and you are encouraged to contact us in the event you would like to gain more insights. We are excited about the success of the Family Conference and hope all of you will be able to join us in Atlanta in 2009 or at one of the regional family gatherings we are planning for 2008.

Searching for a cure!

Livia Stilke, Rachel Smith, Mason Stilke, and Mitchell Smith