With plans to be an annual event, the first Cruising for Connor event to benefit Bardet-Biedl Syndrome (BBS) research took place in mid-July at North Platte, Nebraska. With 75 riders, a hog roast, live band, bake sale and a huge crowd for the auction, attendees raised more than $9,100 to benefit BBS research at Marshfield Clinic Research Institute.
Dr. Robert Haws, pediatric nephrologist, and his team at Marshfield Clinic Health System are at the forefront of BBS research worldwide. Their clinics and clinical registry are pioneering care for patients with this incredibly rare disease.
The Fraternal Order of Eagles Aerie and Auxiliary 2839 matched $10,000 for Cruising for Connor. With this match through their Kidney Disease Fund, Cruising for Connor brought in $20,000 for BBS research.
Connor's family, who hosted the event, shared their gratitude for support from the community, family and friends. Heather Axil, Connor’s mom shared his story:
“Connor Joe is a happy 10-year-old getting ready to start the fifth grade. Connor has a deep love for Thomas the train and Lighting McQueen. He also loves to sing and dance and play with his brothers,” said Axil.
She went on to say, “Shortly after his birth, we knew something wasn’t right. He started putting on too much weight and would sleep a lot. In his toddler years when he wasn’t talking, we reached out to doctors. In 2015, after years of genetic testing, BBS was diagnosed. We quickly found out that no one here in Nebraska knew how to help us. I searched the internet and found the families of BBS group. Mary Morris encouraged me to contact CRIBBS at Marshfield Clinic and from there we found Dr. Haws.”
Connor’s first visit inspired his family to fundraise for BBS
“The summer of 2017, we made our first 800-mile journey to Marshfield Clinic,” Axil said. “Dr. Haws greeted us in the lobby at Marshfield, and sat and talked with my son. I’ve never seen a doctor care so much. I knew he wanted to help and had the knowledge to do so. The decision to go to Marshfield was the best thing we could do for Connor and we will travel there every year.”
”When we returned back home, we felt like we could help Marshfield Clinic. I wanted to raise awareness for BBS and maybe if we’re lucky a little money too. That’s how Cruising for Connor started,” she said.
Dr. Haws said BBS impacts every organ of the body, but the kidneys are most importantly affected by this serious condition.
"The most common cause of premature death in children, teenagers and adults with BBS is kidney failure,” he said. “The support we have received up until now has allowed us to carefully examine and document the favorable impact kidney transplantation has made in BBS. It has been life-changing for the BBS community. Our research has helped nephrologists and transplant surgeons learn about the challenges and benefits of kidney transplantation in the BBS patients.”
The Research Institute is now examining methods to improve kidney function by successful weight loss. Obesity is a very common problem in BBS and begins in infancy. Research shows that obesity speeds the decline of kidney function and Dr. Haws said we are now using medication designed specifically for individuals with BBS and similar genetic disorders to lose weight.
“We are excited by the 18 months of success we have seen so far,” Dr. Haws said. “Our patients' kidney function is benefiting from the therapy. We are also looking at markers in the blood stream and urine that will help us understand the effects of this therapy on the kidneys.”
“Our advances in BBS patient care and research would not be possible without generous support from donors and families like Connor's,” he said. “Thank you for all you do.”
To make a gift toward BBS patient care and research, click here.