Chicago Hosting Cystinosis Research Network Conference Mid-July
FOR IMMEDIATE RELEASE
Contact: Christy Greeley
Lake Forest, IL – June 11, 2015 – The Cystinosis Research Network (CRN), a Chicagoland-based 501(c)(3) charitable organization, is hosting its family conference in Chicago, Illinois from July 16 to July 18, 2015. This summer’s event features the first global gathering of art from over 100 artists from 30 countries who are affected with cystinosis, a rare, genetic-metabolic disease. Chicago is the first stop for the “Dream, Achieve, Inspire” art show with cystinosis support groups in Brazil, Mexico, Spain, and the United Kingdom lining up to share the unprecedented collection.
Miriam Narvaez from Mexico poses with her painting included in the “Dream, Achieve, Inspire” exhibit. She was diagnosed with cystinosis at 10 months old.
“The exhibit is designed to bring artists with cystinosis together to see each other as beautiful and creative. The worldwide participation has been overwhelming!” says Katie Larimore, Exhibit Chairperson.
The biennial event unites cystinosis families and leading experts, doctors, and scientists to discuss critical topics from medical research and management techniques to social challenges and insurance coverage. In addition to these essential conversations, raising cystinosis awareness and advancing access to life-changing treatment is top of mind. Mrs. Larimore said, “In countries such as Iraq, Venezuela and Thailand we hope to gain recognition for the patients there and make vital medicines available for the first time.”
Floridian, Lee Knaus, is an artist by trade. He is living with cystinosis and aspires to have his own art studio.
Cystinosis is a rare, genetic, metabolic disease impacting approximately 2,000 people worldwide. Cystinosis causes an amino acid, cystine, to accumulate in the kidneys, eyes, liver, muscles, pancreas, brain, and white blood cells. Without treatment, children with cystinosis can develop end stage kidney failure at approximately age nine. This disease has devastating outcomes when untreated. The CRN is comprised of family, friends, and medical researchers dedicated to finding a cure, developing treatments, and enhancing the quality of life for those affected by cystinosis.
Who: Artists with rare disease called cystinosis
What: Travelling art exhibit, “Dream, Achieve, Inspire” debuting at the Cystinosis Research Network Family Conference
Where: Chicago, Illinois. The Magnificent Mile Doubletree by Hilton
When: July 16- 18, 2015
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.
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:
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: https://cystinosis.org/research/grant-guidelines
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.
For 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
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.
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!