We are participating in this fundraiser for Luke. He was diagnosed with Bardet Biedl Syndrome in 2018 after having vision and genetic testing at the Retina Foundation of the Southwest in Dallas.

Those of you that are fortunate enough to know Luke, know that he has a heart the size of Texas. He loves his Red Raider basketball team (was and still is a big fan of Davide’ and now has a trip to Italy on his bucket list). Luke also loves spending time with his family and anything sports related. He and Will form a fantasy team in every sport each season. This year Luke is assisting with the Kingdom Prep basketball team.

Join us in this effort to support BBS. Luke has gone to the Marshfield Clinic twice since his diagnosis. The team at the Clinic are awesome and have helped so much in our BBS journey.

The Story of BBS

Bardet-Biedl syndrome (BBS) is a rare genetic disease affecting every organ system in the body. BBS begins to affect the health of a child before birth and continues to affect daily activities throughout life. Although the prevalence of BBS is only about 1 in 100,000 individuals it impacts the lives of thousands of people. BBS is diagnosed based on different features such as:

Vision loss or blindness

Obesity resulting from impaired regulation of hunger

Problems affecting urinary and genital organ function and structure

Chronic kidney disease

Extra fingers and toes

Heart problems

Problems with language, thinking, judgment and memory

Endocrine disorders that may affect growth and development, metabolism, sexual function, reproduction and mood

Sadly, because it is so rare, BBS may not be recognized early. This may delay the start of treatment and support for at-risk families.

Your walk can make a difference, by helping to support the much needed research and treatment plans for BBS:

Marshfield Clinic Research Institute is a recognized leader in care and research in BBS. Physicians and scientists at Marshfield Clinic are championing research that makes a difference in the lives of BBS. The Clinical Registry Investigating BBS (CRIBBS) is the largest international registry of its kind, gathering information on the complex features of more than 600 individuals with BBS. CRIBBS has provided invaluable information to individuals and families affected by BBS; guidance on best practices to physicians; and expanded scientific insights to researchers. Research in new therapeutics in BBS is a central effort in our scientific and clinical efforts.

Marshfield Clinic Health System is the only health system in North America that provides comprehensive care for patients with BBS. In 2013, we launched the nations first treatment center for BBS patients under the direction of Dr. Robert Haws, a Marshfield Clinic Health System nephrologist. Patients from across the U.S. and overseas have traveled to Marshfield to participate in these four-day comprehensive clinics. Since BBS can affect patients differently, there is an emphasis on a multi-specialty approach to address the need of each individual patient and family. We bring in Cardiology, Ophthalmology, Nephrology, Endocrinology, Gastroenterology, Dentistry, Behavioral Health, Neuropsychology and Physical Therapy. "Our diversity allows us to tailor the experience to each patient," said Dr. Haws, "Providing unified care in a national model for how to treat other diseases. "

Following the clinic, a thorough care plan and specific recommendations are provided to the patient's health care provider, and a BBS clinic nurse coordinator provides ongoing support. "It's the greatest joy in my life to see these kids coming here, getting great care, and leaving with a better understanding of what they can do at home," said Dr. Haws.

With each BBS patient and family we serve, we know we are contributing to research that will improve the health and quality of life of individuals affected by BBS.