Dear BBS Family,
I hope you have enjoyed a wonderful holiday season. Here is our monthly update on BBS activities. Please take time to review the January updates. There are a number of wonderful opportunities to make new friendships, share experiences and grow together. The opportunities are not limited to the residents of the United States or North America. We have taken efforts to make the meetings available to people from across the world. We are also pleased to let you know that we are broadening our outreach to Spanish speaking countries. BBS affects individuals in every country and it is important to us to reach out to you.
In the coming weeks, you may be invited to participate in two surveys. I would deeply appreciate your participation. The surveys will take only a few minutes and would be very helpful. The surveys will be sent via email so if you have a preferred email address please let me know by contacting me at haws.robert@marshfieldclinic.org.
Finally, our team is developing guidelines that will be available to you, your doctors, dieticians, nurses, and therapists. The guidelines will provide our recommendations for outstanding and comprehensive care based on our experience in the Center of Excellence for BBS. I would value your recommendations on specific topics or ideas that need to be discussed in this publication.
Best regards,
Bob Haws, M.D.
Director, Center of Excellence for BBS
BBS Fundraising
The BBS Families Store
Check out the designs at https://www.cafepress.com/bbsfamilyshop. The Families Store has new designs coming soon, with 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.
Social Media and Community Connections
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
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
Groups
BBS Young Adult Group: No group this month, as Joelle is out of town, but she says that you can email her if you need to get hold of her.
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
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 Movie Night: Friday, January 21, at 7:30 pm Central Time
Moderated by Katherine Stewart. The movie for this month is My Fair Lady. 1964. Starring Audrey Hepburn and Rex Harrison. Description: A snobbish phonetics professor agrees to a wager that he can take a flower girl and make her presentable in high society. Based on the play Pygmalion by George Bernard Shaw.
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. This movie is 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.
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 Parents Support Group: Monday, January 17 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 talk about setting reasonable goals for the new year for our children, and for us as caregivers. We will talk about how to get our children and ourselves moving more in the new year with realistic healthy exercise. And as usual, we will discuss any and all issues that parents wish to talk about. 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
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 Book Night: Friday, January 7, 7:30 pm Central Time
Moderated by Ellyn Hunter. BBS book night usually 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 reading The Santa Suit, by Mary Kay Andrews. Description: Newly divorced Ivy Perkins is looking for a change in her life and buys an old farmhouse, sight unseen. In a closet, Ivy finds an old Santa suit with a note in the pocket from a little girl who has a special Christmas wish.
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 Sports Club: Thursdays January 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. 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, January 12 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
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 Weight Watchers Group: Saturdays, January 8, 15, 22, and 29, 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.
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 Adult Discussion Group: Sunday, January 2 and 23, 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
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#
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