Charlotte, NC Symposium at Levine's Children's Hospital June 13, 2018
Dr. Roehrs invited Kylene and Kim to Levine's to speak with some of the doctors and nurses about HLH. With Dr. Roehrs' presence at Levine's, the doctors are wanting to learn more and more about HLH, what to look for, the treatment, etc. Kylene told a brief version of Connor's story. There were also two other families there that have been affected by HLH. Mrs. Kristin Aiken flew in from St. Louis to be with the doctors one on one all day with Dr. Roehrs. Kristin lost both of her sons to HLH within a year of each other. She found out it was primary HLH (genetic) so since then she has adopted two other boys and does a ton of fundraising in the St. Louis area. Also Charlie and Carrie Minnick were there with their son, Camden. They are from Apex, North Carolina. Carrie found out Camden had HLH when she was pregnant and Camden was born 6 weeks early. Dr. Roehrs saved Camden's life by doing a BMT and now Camden is a healthy 2 year old. After the symposium, most of us went to dinner to further discuss where we go from here.
Greenville, SC Symposium at BI-LO Charities Children’s Cancer Center August 21, 2018
Dr. Roehrs mentioned to Kylene and Kim he wanted to visit Greenville, SC as he knew some of the doctors there and they had seen several cases of HLH recently. He wanted us to come and share about Connor and our fundraising efforts in Charlotte. Of course we said yes and Amber was able to attend as well. There were about 4-5 doctors, 4-5 nurses and some administrative staff present. Dr. Roehrs had a very detailed presentation about what HLH is, symptoms to look for and the treatment process. Everyone was very into the presentation and had several questions. It was a great learning experience for all. We even got to meet a very special HLH patient, Zoe. Zoe's mother and Kylene had been chatting on Facebook thanks to a post Kim put on one of the HLH pages about families in the Southeast. Stephanie, Zoe's mom, and Kylene talked about Dr. Roehrs and Levine's. Zoe was diagnosed about 7 weeks ago, but is fortunatley at home and on steroids. Steroids is not the long term answer and Stephanie has been referred to Cincinnati. Stephanie was able to speak with Dr. Roehrs after the symposium and Zoe now has a referral in to Levine's as well. This is great news and we hope that Zoe will be able to come to Levine's for treatment and ultimately a BMT by Dr. Roehrs. Charlotte is much closer to home for Stephanie and Zoe than Cincinnati and we would be honored to help them in whatever way we can while they are here. Until then, we pray for Zoe and her family!
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Columbia, SC Symposium at Palmetto Health Richland Children's Hospital on March 1, 2019
Dr. Roehrs and Kylene traveled down to Columbia for grand rounds at the Richland Children's Hospital. This is a teaching hospital and where Dr. Roehrs graduated. He knew many of the doctors there. There were probably about 50-60 doctors and residents in attendance for this hour long presentation. At the end of the presentation, Dr. Roehrs highlighted Connor Crazies and our partnership with Levine's. We were able to take a tour of the Children's Hospital after the presentation.
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Where do we go from here?
We don't know, but we hope to visit Asheville, Charleston and Atlanta in the near future.
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