Greetings,
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 want to share with you some recent articles from Rare Revolution Magazine that might be helpful to people impacted by BBS. The first article is an impact report on unmet needs. The other article describes a young man with BBS and his experience with vision loss.
The CRIBBS registry continues to grow and we are fast approaching 800 participants. Your continued support of CRIBBS and willingness to take part in annual interviews is leading to important discoveries about BBS. We are so grateful for your time. Hearing from you every year is very helpful, even if it feels like not a lot has changed.
Please join if you have not joined CRIBBS by signing up on our webpage at www.bbs-registry.org. We wish to give thanks to the BBS Foundation that has provided HUGE support to CRIBBS.
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
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
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.
https://www.marshfieldclinic.org/mDonate/Documents/BBS-cookbook-latest-1.pdf
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/
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.
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:
https://www.marshfieldclinic.org/giving/bbs#C
Groups
Login 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:
https://us06web.zoom.us/j/9839232791?pwd=N3ROYnVxcnY2VnNkUUFxUHdBOTVNZz09
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: Friday, September 15, 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 using the Marshfield Clinic Zoom site. For more information, contact Maxie at 2themax03@gmail.com
BBS Book Night: Friday, October 6, at 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 Death al Dente, by Leslie Budewitz. Description: The town of Jewel Bay, Montana - known as a Food Lovers' Village - is obsessed with homegrown and homemade Montana fare. When Erin Murphy takes over her family's century-old general store, she turns it into a boutique market filled with local delicacies. But Erin's freshly booming business might go rotten when a former employee turns up dead.
BBS Sports Club: Thursdays, September 7, 14, 21, and 28, at 5:30 pm Pacific Time.
Facilitated by Bob Stewart, the BBS Sports Club now boasts 12 very active weekly members who log into our Zoom meetings, held each Thursday, 5:30 PM, PST. New members are always welcomed. Our primary purpose is to have fun in a networking, upbeat, social way. Sports contests are held each week with sports memorabilia prizes.
BBS Sports Club meetings are via Zoom and ordinarily scheduled for 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, September 6 and 27, 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, September 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 using either Weight Watchers or My Fitness Pal to lose weight 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: Saturday, September 17, 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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