Dear BBS Family,
Happy Rare Disease Day! Bardet-Biedl syndrome is one of ~7000 rare diseases but it is the most important rare disease for each of us. I am proud of the efforts of so many people that I have come to know in the nearly 30 years that I have been part of the BBS family. Recently, I had the privilege of getting to know two wonderful women that are making a difference. I want to introduce you to Laura Chedester and Gillian Jackson. Their podcasts are called “Living the Rare Life- BBS”. I had the opportunity to join Laura and Gillian to discuss BBS and our efforts at the Center of Excellence for BBS. I hope you will take time to enjoy our discussion. Here is the link: https://open.spotify.com/show/7mlXlbruR5l1miAsCiWlxM
With the assistance of everyone in CRIBBS we have published an article in Clinical Genetics entitled, “Kidney Failure in Bardet-Biedl Syndrome”. The paper reports critical information about kidney failure in the largest international population of individuals with BBS in the world. Here is the link: https://pubmed.ncbi.nlm.nih.gov/35112343/. Please read the article or at least the abstract (it is only 200 words long) and let me know your questions. Again, I wish to emphasize that this information would have been impossible to gather without your commitment, donations and support to CRIBBS.
I wish to give a shout out to Ellyn Hunter and others for opportunities that are being extended to reach out and meet others through community connections. The information below is for members of the BBS family across the world. Zoom makes worldwide conversations possible.
Finally, may I implore all of us to pray for peace in our world. The BBS community is composed of people from many countries and I pray that we may all work together to make the world a better place.
Best regards,
Bob Haws, M.D.
Director, Center of Excellence for BBS
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 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
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
Log-in 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 land line:
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 Young Adult Group: Monday, March 14 at 6:00 pm Eastern Time
Facilitated by Joelle Swyka. This is a group for young adults ages 18-30. We meet on the second Monday of the month at 6:00 pm Eastern Time. This is a great place for younger adults who have BBS to meet and talk with others who are dealing with the same issues. Topics will vary, but we may be sharing ideas on everything from cooking, to shopping, to managing money. We can explore technology and adaptive tips and tricks, as well as discussing transitions in college, jobs, or careers. The group will be meeting on the Marshfield Clinic Zoom site. For new members, before joining the group, contact Joelle at joeswyka@gmail.com
BBS Movie Night: Friday, March 18, at 7:30 pm Central Time
Moderated by Katherine Stewart. The movie for this month is Rear Window. 1954. Starring James Stewart and Grace Kelly. Directed by Alfred Hitchcock. Description: Professional photographer L.B. "Jeff" Jefferies breaks his leg while getting an action shot at an auto race. Confined to his New York apartment, he spends his time looking out of the rear window observing the neighbors. He begins to suspect that a man across the courtyard may have murdered his wife. Jeff enlists the help of his high society fashion-consultant girlfriend Lisa Fremont and his visiting nurse Stella to investigate.
Here's how it works. You'll watch the movie before we get together, and then at 7:30 pm Central Time on that Friday, we will get together on the Marshfield Zoom site to talk about the movie. Movies are always on Sero, an audio-descriptive site which has a free two-week trial for new subscribers (after that it’s six dollars a month if you want to keep it). You can also look for the movie through services like Amazon, Netflix, Hulu, HBO Max, and other streaming services, as well as through local libraries and cable providers. All BBS adults and their families are welcome.
BBS Parents Support Group: Monday, March 21 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. For this month’s call, we will as always discuss any topics that parents wish to discuss. We will also touch on ways to stay physically active during the winter months and continued issues with COVID. 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, March 4, 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 Wedding Pearls, by Carolyn Brown. Description: Travel agent Tessa is approached by a handsome lawyer with an unusual proposition. Her birth mother and grandmother want to meet her, and they propose that she join them on a month-long road trip across Texas in a 1959 Cadillac.
BBS Sports Club: Thursdays March 3, 10. 17, 24, and 31 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, March 16 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 the Marshfield zoom site every third Wednesday at 7:00 pm Central Time. For new members, before joining the group, contact Ellyn at ellynhunter@charter.net
BBS Weight Watchers Group: Saturdays, March 5, 12, 19, and 26 at 12:00 noon Eastern Time
Facilitated by Jane Perry, 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, March 6 and 27, 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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