Dear BBS Family,
It is hard to believe that May is here. For those of us that live in cooler parts of the northern hemisphere we are excited for the arrival of spring while we recognize that it is cooling down in the southern hemisphere. I wish to express my sincere appreciation to everyone that participates in CRIBBS especially our newest members. We are approaching 650 participants living in nations across the world. The information you share with our team is being used to benefit the entire BBS community. In the near future a paper will be available for you to read regarding kidney failure in BBS. I cannot give you all the details yet but through CRIBBS we have demonstrated that less than 10% of individuals with BBS will develop what is termed “end-stage kidney disease”. That is a term that sounds hopeless. It is not because dialysis and/or transplant is possible. In a prior paper from CRIBBS data we showed that kidney transplantation can go very well in individuals with BBS. In the upcoming paper we will report the genetics of kidney failure, urologic issues that may contribute to kidney failure and the role of kidney failure in long-term health. Once again, this paper was made possible because of your generous donation of time and effort to CRIBBS. An interesting paper looking at sleep and physical activity patterns in BBS will be coming out very soon too. Dr. Jeremy Pomeroy, who was the first author on the paper published on weight patterns and genetics in BBS (see our webpage at www.bbs-registry.org to read the paper) is also the lead author on the paper. I hope to share it with you on the webpage soon.
I do want to also update you about the medication Setmelanotide. I gave an oral presentation at the Pediatric Endocrine Society this weekend. The research is encouraging. Hopefully government approval is forthcoming so we can start prescribing it to interested individuals with weight challenges and BBS. I have no special knowledge about the FDA in the United States let alone other government oversight programs in the many countries that our CRIBBS member reside but I do hope that this first ever target therapy designed for obesity treatment in individuals with BBS will be available soon.
The CRIBBS team is also working with other researchers and organizations to advance therapies for BBS. I want to express my deepest appreciation to each of you for being part of CRIBBS. We want CRIBBS to be an international effort helping scientists, health care providers and most of all helping you to climb to new heights of good health and optimal quality of life.
Below is some wonderful information from the BBS Community.
Upcoming Events
Fundraising: BBS Family Cookbook
We thank everyone for their wonderful recipes, and we hope to have the cookbook published digitally by June 1. We plan to have publication and availability information in the next monthly email.
The BBS Families Store: Ongoing
This online store is a great location where you can purchase a wide variety of items that you might want to consider as a birthday gift or Christmas present or just something fun for yourself such as a T-shirt or coffee mug. Check out the new designs for this summer's BBS Lions camp: https://www.cafepress.com/bbsfamilyshop All profits from the BBS store will directly support BBS Research at the Center of Excellence for BBS.
Social Media
BBS Adults Facebook page
This is a place for adults with BBS. You can connect with others who have similar experiences, support each other and share your journey through life.
https://www.facebook.com/groups/648889312653215
Families of Bardet-Biedl Syndrome Facebook page
If you have a family member with BBS, please consider joining this page. You can connect with other families, share information, and know that you’re not alone.
https://www.facebook.com/groups/138529479566568/
Groups
BBS Movie Night: Friday, May 28 at 7:30 pm Central Time
Co-moderated by Katherine Stewart and Ellyn Hunter. Below are the three movie choices for May. Majority vote will decide which one we watch, so cast your vote either by replying to the post in the BBS Adults Facebook page, or by emailing ellynhunter@charter.net by May 10 at 5:00 pm Central Time.
Bohemian Rhapsody: The story of the legendary British rock band Queen and lead singer Freddie Mercury, leading up to their famous performance at Live Aid (1985). Directed by Brian Singer.
To Catch a Thief: A retired jewel thief sets out to prove his innocence after being suspected of returning to his former occupation. Directed by Alfred Hitchcock; starring Cary Grant and Grace Kelly.
Brooklyn: An Irish immigrant lands in 1950s Brooklyn, where she quickly falls into a romance with a local. When her past catches up with her, however, she must choose between two countries and the lives that exist within. Directed by John Crowley; starring Nick Hornby and Colm Toibin.
Here's how it works. You'll watch the movie before we get together, and then at 7:30 pm Central Time on Friday, May 28, we will get together on the Marshfield conference call line to talk about the movie. All of these movies can be found on the Sero app for the blind (formerly iBlink Radio), which gives descriptive audio of the scenes. They are offering a two-week free trial, so you can use it for this movie night; if you like it, it costs $5.99 per month after that. You can also look for these movies through services like Amazon, Netflix, HBO Max, and other streaming services, as well as through local libraries and cable providers.
Log-in info for the conference call:
Call 877-998-0997 (toll free only in the United States and Canada)
Wait for the prompt and then enter the Call ID: 046618107 followed by the pound sign
All BBS adults and their families are welcome.
BBS Parents Support Group: Tuesday, May 18 at 7:00 pm Central Time
This group is facilitated by Maxie and David McGlohan and is geared toward parents of children with BBS from birth to age 18. But everyone is welcome to join in even if their loved one is older than 18. This group is a safe place where parents can discuss any and all issues. We usually will have a few topics to discuss that we share ahead of time, but we discuss any topics that parents want to talk about. David Sr is a dentist and I’m a family nurse practitioner so we are very comfortable discussing dental and medical topics. Our April phone call went great! On May 18, we will continue to discuss pandemic related stressors, BBS resources, and any other topics that parents wish to discuss. We look forward to connecting with and supporting each other during these difficult times.
The group meets the third Tuesday of each month at 7:00 pm Central Time. To join the group, call 877-998-0997 (toll free only in the U.S. and Canada); wait for the prompt and then enter the Call ID: 046618107 followed by the pound sign. For more information, contact Maxie at 2themax03@gmail.com
BBS Young Adult Group: Saturday, May 8 at 4:00 pm Eastern Time
Facilitated by Joelle Swyka. This is a group for young adults ages 18-30. We meet on the second Saturday of the month at 4:00 pm Eastern Time for discussion and conversation. We will be sharing ideas on everything from cooking, to shopping, to managing money. We will explore technology and adaptive tips and tricks, as well as discussing transitions from high school to college, jobs, or careers. The group is now meeting on Google Meets: https://meet.google.com/npp-jebf-tqv For new members, before joining the group, contact Joelle at joeswyka@gmail.com
BBS Book Night: Friday, May 7, 7:30 pm Central Time
Moderated by Ellyn Hunter. BBS book night meets the first Friday of every month at 7:30 pm Central Time. The book is always available from BARD, and usually from Audible, local libraries, and possibly Bookshare. To join the group, call 877-998-0997 (toll free only in the U.S. and Canada); wait for the prompt and then enter the Call ID: 046618107 followed by the pound sign. On May 7, we will reading The Bookshop of Yesterdays, by Amy Meyerson. Description: Miranda Brooks grew up in the stacks of her uncle’s bookstore, solving the inventive scavenger hunts he created just for her. But on Miranda's twelfth birthday, her uncle suddenly disappeared. She doesn't hear about him again until sixteen years later when she receives unexpected news: Billy has died and left her Prospero Books. When Miranda returns home to the bookshop she finds clues that Billy has hidden for her inside novels on the store's shelves, in locked drawers of his apartment upstairs and in the name of the store itself. Quickly she becomes determined to solve Billy's last scavenger hunt. But will she want to uncover the terrible secret that tore her family apart?
BBS Sports Club: Thursdays, May 6, 13, 20, and 27 at 5:00 pm Pacific Time
Facilitated by Bob Stewart, the BBS Sports Club is an association of the BBS family where members love sports of all kinds. We currently have 12 club members. Weekly meetings enable participants to talk sports in a fun, social way. Meetings include contests where members compete for prizes and prestige. BBS Sports Club meetings are via Zoom and scheduled for 5 PM (Pacific Time) to 5:45 PM (Pacific Time) every Thursday except for holidays. Where a holiday falls on a Thursday or Friday, the meeting is scheduled for Wednesday. Those who are interested in joining the group should contact Bob Stewart at bstewart@yardarmtech.som to get the current Zoom login information.
BBS Women’s Group: Wednesday, May 5 and 26 at 7:00 pm Central Time
This group is an informal gathering for women who have BBS, ages 25 and up. It provides a place for sharing personal experiences, resources, and adaptive strategies, as well as for establishing interpersonal connections. The group meets by telephone conference call every third Wednesday at 7:00 pm Central Time. To join the group, call 877-998-0997 (toll free only in the U.S. and Canada); wait for the prompt and then enter the Call ID: 046618107 followed by the pound sign. For new members, before joining the group, contact Ellyn at ellynhunter@charter.net
BBS Weight Watchers Group: Saturdays, May 1, 8, 15, 22, and 29 at 12:00 noon Eastern Time
Facilitated by Jane Perry, this is a weekly group for both men and women who are already signed up for Weight Watchers or are thinking about signing up, and would like to get together for more support, especially since so many of us in the BBS community are struggling with weight. The meetings may include a short video through YouTube, with the majority of the time devoted to sharing ideas, recipes, and experiences. The group meets Saturdays at 12:00 noon Eastern Time. To join the group, call 877-998-0997 (toll free only in the U.S. and Canada); wait for the prompt and then enter the Call ID: 046618107 followed by the pound sign.
BBS Adult Discussion Group: Sunday, May 16, at 7:00 pm Central Time
This is a group for adults, both men and women, ages 25 and older. The purpose of the group is to provide adults with BBS with a collaborative forum to share their experiences, ideas and resources with one another, as well as to create interpersonal connections. The atmosphere is informal, and topics vary. The group meets by telephone conference call every third Sunday at 7:00 pm Central Time. To join the group, call 877-998-0997 (toll free only in the U.S. and Canada); wait for the prompt and then enter the Call ID: 046618107 followed by the pound sign. For new members, before joining the group, contact Ellyn at ellynhunter@charter.net
Warm regards,
Dr. Bob Haws and the members of the Center of Excellence for BBS
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