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Marshfield Clinic Health System (MCHS) Foundation

2021 BBS Walkathon

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.
raised of US$10,000 target
by 169 supporters
Event: 2021 BBS Walkathon, from 9 October 2021 to 10 October 2021
RCN 812822823

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In our first Walkathon, the response was amazing, and this year we are hoping to do even more.


The 2nd Virtual Walk for BBS

Join us as we all walk for at least 30 minutes to help raise money for BBS Research. Ongoing research is helping to change the impact of this rare and serious condition.

When: Saturday October 9th - Sunday October 10th, 2021

Where: Wherever you are: we are hoping to have walkers all over the world. Grab your family and friends to join you; tell us something about who you are and why you are walking and share your photos and stories through the weekend.

Why: To raise money for BBS research. We are already seeing strides in what we have learned. Our goal for this year is $50,000.

How: Make a donation, set up a team, share it with everyone you know through email, Facebook, and other social media sites.

Check out the BBS Family store where you can buy BBS Walkathon t-shirts, hats and other items; profit from these sales support BBS Research at Marshfield clinic.

BBS Family Store - click on BBS Family Store to shop

We raised almost $36,000 for BBS Research at Marshfield Clinic last year. Here are some of the things that the money did:

-Been critical to the BBS Research at the Marshfield Clinic Research Institute

-Used in the study of genetic underpinnings of end-stage kidney disease (ESRD) in individuals with BBS. ESRD is the most common morbidity associated with the premature death in individuals with BBS. The research is designed to identify individuals at highest risk of ESRD and advance targeted interventions that will improve health care for individuals with BBS.

-Permitted open access publication of the paper titled, "Sleep and Physical Activity in Adults and Children with Bardet-Beidl Syndrome" in the journal Orphanet. The Paper outlines important characteristics of physical activity and sleep that may impact overweight and obesity in individuals with BBS.

Supporting Sponsors: TBD

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 nation's 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.

For more information, please visit:

Prefer to mail in your donation?

Make checks payable to: MCHS Foundation

Memo Line: 2021 BBS Walkathon

Mail to:

MCHS Foundation

1000 N Oak Ave

Marshfield WI 54449

About the charity

As a nonprofit organization, Marshfield Clinic Health System relies on sustaining support from difference-makers like you to fund important patient care, research and education programs. 100% of your gift supports the cause of your choice at MCHS.

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