Tags: news, newsletter

The mission of the Center of Excellence for Bardet-Biedl Syndrome is to enrich the health and quality of life for individuals affected by BBS through compassionate interdisciplinary health care, scientific advancement and community outreach.

We are very excited to report that a new therapy for chronic weight management in people with BBS age 6 and over has recently received approval by the FDA in the US. We have talked a lot about Setmelanotide (also called Imcivree) over the last few years and the important research to evaluate the effectiveness of this medication for people with BBS who struggle with excess hunger and obesity. Imcivree would not have been approved recently had it not been for CRIBBS. Everyone who has contributed to CRIBBS in any way should feel proud of the success we have accomplished in this important step in finding effective treatments for an issue that is such a challenge to so many people with BBS and their families. You can read more about the approval of Imcivree here: https://marshfieldclinic.org/news/news-articles/bbs-weight-management-drug. If you or your health care team have any questions related to Imcivree please reach out to the Marshfield Clinic Center of Excellence for Bardet-Biedl Syndrome at bbs@marshfieldclinic.org. You can also find information about Imcivree from Rhythm Pharmaceuticals here: https://imcivree.com/.  We have also worked with Rhythm Pharmaceuticals as they have developed their patient support program, Rhythm InTune.  Rhythm InTune is designed to provide ongoing treatment support to patients who opt in by educating patients and their health care providers, navigating insurance coverage as they start treatment, providing injection support and offering education on what to expect. For more information, contact patientsupport@rhythmtx.com.

Enrollment is ongoing in a study to determine if Setmelanotide is effective for chronic weight management in children age 2-5 with BBS. We know from past research using CRIBBS that excess hunger and weight are a significant challenge for many in this age group as well and we will keep you informed about the progress of that study.

CRIBBS continues to grow with your support.  We now have 720 individuals in CRIBBS and more than 2600 interviews have been conducted.  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.  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.  We wish to give thanks to the BBS Foundation that has provided HUGE support to CRIBBS.



Social Media and Community Connections

BBS Foundation Global Broadcast of BBS Research Updates

The BBS Foundation will be broadcasting a virtual conference with updates from scientists working on BBS research. The conference will be broadcast on the BBS Foundation YouTube channel at 12pm Eastern Standard Time on July 9. Registration is not necessary. The conference can be found at this link: https://www.youtube.com/channel/UCmkTM7FQb3bkAXEcnO0_kmA/featured.


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.



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.



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!



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 lots of 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.  


Or, if you wish to donate to support BBS care and research at Marshfield Clinic, you can also access the cookbook through their giving page:





NEW Log-in information:  Except for the BBS Sports Club (see the Sports Club listing for separate information), the Zoom login for the BBS groups has changed.  All the BBS groups will meet on the new Marshfield Clinic BBS Zoom site:

Join Zoom Meeting:

You can also join by either a cell phone or land line:

Phone number:  312-626-6799
Alternate phone number:  646 558 8656
Meeting ID:  983 923 2791

One tap mobile (this is what you can program into your contacts on your cell phone)

3126266799,, 9839232791#
6465588656,, 9839232791#


BBS Parents Support Group:  Monday, July 18 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, July 1, 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 Best Friends Forever, by Margot Hunt.  Description:  Florida suburban mom Alice Campbell is surprised when detectives want to talk to her about the death of her wealthy friend Kat Grant's husband, Howard, who fell off their balcony while drunk. And why isn't Kat taking Alice's calls?


BBS Sports Club:  Thursdays July 7, 14, 21, and 28 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, July 20 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 has been moved up one week).  For new members, before joining the group, contact Ellyn at ellynhunter@charter.net

BBS Weight Watchers Group:  Saturdays, July 2, 9, 16, 23, and 30 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, July 10 and 31, 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, except when holidays conflict.  For new members, before joining the group, contact Ellyn at ellynhunter@charter.net

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