The 2015 CRN Newsletter Has Arrived

This newsletter catches up on the latest CRN happenings, including information on the CRN Family Conference: “Winds of Change” to be held July 16 – 18 in Chicago. As our community grows, this event provides a unique opportunity to bring everyone together to discuss the current and future outlook of our organization and to address questions and concerns from all of you in person.

Also featured in the newsletter is a personal message from Jeff Larimore, president of CRN – as well as several other members of the CRN community. Comprehensive financial, fundraising, and research updates are also included.

To access the full newsletter, please visit our newsletter page or download it by clicking here.

2015 Cystinosis Research Network Call for Proposals

Applicants may now submit proposals for the 2015 CRN Call for Research Proposals.

Research proposals may be submitted to CRN for review and consideration. CRN utilizes a Scientific Review Board comprised of leading experts on the disease of cystinosis which reviews grant proposals and submits funding recommendations to the Cystinosis Research Network. More specifically, the Scientific Review Board provides independent, objective review and recommendations regarding each research proposal utilizing grant review guidelines established by CRN and in accordance with the mission of the organization. The Chairperson of the Scientific Review Board summarizes its recommendations and presents them to the Cystinosis Research Network which then votes on each proposed project.

Priority is given to interventional research, both clinical and basic, that will lead to improved treatments for cystinosis. New investigators are particularly encouraged to apply. CRN has a strong interest in funding projects related to advancing Newborn Screening for Cystinosis – applications regarding this subject will have priority.

Applicants must submit an electronic copy of their proposal to:

Christy Greeley, Vice President for Research This email address is being protected from spambots. You need JavaScript enabled to view it.

Submission deadline is May 31, 2015. Proposals will be reviewed in July and notification will be made to applicants in August.

Detailed information on the grant submission process can be found on the CRN website at:

Bonner Paddock to speak at CRN 2015 Family Conference in Chicago

Bonner Paddock is the Founder of the OM Foundation (OMF), which promotes the idea that any one person can make a difference if they dedicate themselves to look beyond their own personal limits to achieve their goals. Bonner is the first person with Cerebral Palsy to ascend Mt. Kilimanjaro and to finish the infamous Ironman World Championship unassisted. He has since raised over $1 Million Dollars to help build and support early learning centers in the US & Africa, which provide therapy for special needs children.  He has also recently launched his first book,One More Step, a memoir about his life living with Cerebral Palsy, conquering the incredibly challenging physical feats described above, and starting his own foundation.  At this year’s Cystinosis Research Network Family Conference, Bonner will share his inspirational story about what held him back for 30 years and how he pushed beyond his own limits to achieve success.  His book, “One More Step”, will be available for all conference attendees.

One More Step

one-more-stepFor 29 years, Bonner Paddock was in denial of his cerebral palsy-until he met Jake Robert. Bonner befriended the young boy, who suffered from severe CP, and his family while participating in his first half-marathon to raise funds for CP research, and was incredibly moved watching Jake be carried across the finish line. That night, Jake passed away.

In the wake of his loss, Bonner and the Robert family formed an extraordinary bond, built on the same unconditional love Jake gave every day of his life. Heartened by their support, Bonner finally had the push he needed. He would live life to the fullest in Jake's honor, accomplishing astounding physical feats and starting a foundation for disabled children along the way.




Bonner and Ashley in her Hart Walker

New Medical Advisory Board Member Announced

The Cystinosis Research Network is proud to announce a new addition to our Medical Advisory Board -- Patrick Gipson, M.D., Clinical Assistant Professor of Internal Medicine & Pediatrics, Division of Nephrology at the University of Michigan Medical Center. Dr. Gipson is board certified in both pediatric and adult nephrology and specializes in genetic kidney diseases and clinical research. We are thrilled to add his expertise to our advisory board, especially in light of our recent efforts in transitioning topics.

2015 Family Conference Announced

The CRN Board is busy planning the 2015 Family Conference, to take place July 16-18 at the Doubletree by Hilton – Magnificent Mile hotel in Chicago, IL. This year’s theme is “Winds of Change” – our community is growing, our needs our evolving, and this conference will address the questions and concerns held by all of our members from diagnosis through the constantly changing demands and concerns of adults living with this disease.

Save the date information will be mailed in the next few weeks. Registration material to be available soon after on the CRN website and mailed to homes. We look forward to seeing everyone in Chicago this summer!


Charity Golf Event Supporting Cystinosis Research Network

Save the Date! June 6th2015 at 9 AM.

Thanksgiving Point Golf Course Lehi Utah

Cystinosis is working with me now to build a web page to register for the event.

If you are interested in Sponsorships please let me know and I will reach out to you personally.

Thank you for your continued support and I’ll see you in June!

Tim Miller



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