Dear BBS Family,
This will be my last contribution to the BBS Newsletter. It has been a delight to be part of the effort to bring light and hope to the BBS community. Yesterday, I had the pleasure of presenting information at a virtual meeting for the Pediatric Endocrinology Society. As a community, we have come a long way. Doctors are becoming more aware of BBS. They are excited about targeted therapies to treat excessive hunger and obesity in individuals with BBS. Furthermore, the medical community is recognizing the impact of excessive hunger and obesity on family life. Setmelanotide is a huge breakthrough and hopefully will be available in many countries in the near future. There may be other options too. That is exciting in itself. I do want to point out that a recent scientific publication reporting that bariatric surgery has not be highly effective for most individuals with BBS that undergo the procedure. I encourage you to consider lifestyle modifications and Setmelanotide as the first line therapy for obesity. Other medications used for obesity can be considered if Setmelanotide does not work well.
The Clinical Registry Investigating BBS (CRIBBS) continues to grow with your support. We now have 713 individuals in CRIBBS. This represents a lot of work on everyone’s part. The registry makes it possible for us to examine the critical features of BBS that will make a difference in your lives. Setmelanotide would not be approaching FDA approval in the US without CRIBBS. Information about kidney failure, kidney transplant success, sleep patterns, dental care, seizures and so much more would not be available without CRIBBS. Please join if you have not joined CRIBBS by signing up on our webpage at www.bbs-registry.org. If you have joined, please continue to be available for our annual interviews. I want to express my deepest appreciation to the BBS Foundation that has provided HUGE support to CRIBBS.
Thanks to all of you and best wishes,
Bob Haws MD
Social Media and Community Connections
BBS Adults Facebook page
This is a place for adults who have 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/
Bardet Biedl Kitchen Facebook page
Bardet Biedl Kitchen is a place to share your healthy recipes, seek nutrition advice, and eat healthier. We are open to all diet plans given our different needs. Let’s make this the best kitchen yet!
https://www.facebook.com/groups/201421143800259/?ref=share
The BBS Families Store
Check out the designs at https://www.cafepress.com/bbsfamilyshop. The Families Store has T-shirts, sweatshirts, coffee mugs, hats and gifts. All profits from the BBS store will directly support BBS Research at the Center of Excellence for BBS at Marshfield Clinic.
BBS Family Cookbook
The BBS Family Cookbook has many healthy and delicious recipes, collected from members of the BBS community. Try them, share them, and tell others about your favorites on the BBS Adults, Families of BBS, and Bardet Biedl Kitchen Facebook pages. Click below to download the BBS Family Cookbook.
https://www.marshfieldclinic.org/mDonate/Documents/BBS-cookbook-latest-1.pdf
Alternatively, if you wish to donate to support BBS care and research at Marshfield Clinic, you can also access the cookbook through their giving page:
https://www.marshfieldclinic.org/giving/bbs#C
Groups
Login information: Except for the BBS Sports Club (see the Sports Club listing for separate information), all the BBS groups meet on the Marshfield Clinic BBS Zoom site:
Join Zoom Meeting:
https://zoom.us/j/93172496421
You can also join by either a cell phone or landline:
Phone number: 312-626-6799
Alternate phone number: 646 558 8656
Meeting ID: 93172496421#
One tap mobile (this is what you can program into your contacts on your cell phone)
3126266799,,93172496421#
6465588656,,93172496421#
BBS Parents Support Group: Monday, May 16 at 7:00 pm Central Time
Please join us for the BBS parents support group this month. 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. We will as always discuss any topics that parents wish to discuss. We welcome any newly diagnosed families to offer information and support. This group is a safe place where parents can discuss any and all issues. David Sr. is a dentist and I’m a family nurse practitioner so we are very comfortable discussing dental and medical topics. We look forward to connecting with and supporting each other during these difficult times.
The group meets the third Monday of each month at 7:00 pm Central Time, using the Marshfield Clinic Zoom site. For more information, contact Maxie at 2themax03@gmail.com
BBS Book Night: Friday, May 6, 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. The group uses the Zoom site for Marshfield Clinic. This month, we will be reading The Fix, by David Baldacci. Description: Amos Decker witnesses a murder outside FBI headquarters. A family man shoots a female teacher execution-style, then turns the gun on himself. DIA agent Harper Brown orders Decker's team to back off--the murder is part of an open investigation and is a matter of urgent national security.
BBS Sports Club: Thursdays May 5, 12, 19, and 26 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. 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 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.com to get the current Zoom login information.
BBS Women’s Group: Wednesday, May 25 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 normally meets every third Wednesday at 7:00 pm Central Time on the Marshfield Zoom site; this month it will meet the fourth Wednesday. For new members, before joining the group, contact Ellyn at ellynhunter@charter.net
BBS Weight Watchers Group: Saturdays, May 7, 14, 21, and 28 at 12:00 noon Eastern Time
Facilitated by Joelle Swyka, this is a weekly group for individuals 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 are a great place to share ideas, recipes, and experiences, and to support each other throughout our weight management journey. The group meets using the Marshfield Clinic Zoom site.
BBS Adult Discussion Group: Sunday, May 15, 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 the Marshfield Clinic Zoom site every third Sunday at 7:00 pm Central Time. For new members, before joining the group, contact Ellyn at ellynhunter@charter.net
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