Dear BBS Family,
I want to thank each of you for participating in the Clinical Registry Investigating BBS (CRIBBS). The registry continues to grow and promote understanding and better care for individuals with BBS. Two examples of the impact of CRIBBS are the following:
- The importance of kidney disease in BBS — A manuscript submitted this month for publication carefully examines features of kidney and urologic disease in 607 participants in CRIBBS. I believe this manuscript will help doctors and researchers across the world provide better care for individuals with BBS. Without you help this manuscript would never be published. I will share the manuscript with each of you once I receive permission.
- Collaborations with research organizations and pharmaceutical companies wanting to make a difference in BBS — CRIBBS has become an important contributor to research that will be life changing. This week I will have the opportunity to present information at ObesityWeek®. The presentation will be available to thousands of doctors and researchers as they learn about new therapies and BBS.
Thank you to everyone that participates in CRIBBS. Your time, your sacrifices and release of your medical records to our CRIBBS staff makes a difference.
Now for some great information about ongoing activities.
Dr. Bob Haws
BBS Fundraising
2nd Annual BBS Virtual Walkathon
Thank you to everyone who walked and/or donated to the October BBS Walkathon for Marshfield Clinic. We would love to reach our goal of $10,000. You can still help us get there by donating, either through one of the walkers that you might know or by clicking on the “Give Now” button on the main page. Go to https://www.justgiving.com/campaign/2021BBSWalkathon to sign up, and to read more about BBS at Marshfield.
The BBS Families Store
Check out the new designs at https://www.cafepress.com/bbsfamilyshop. The Families Store is a great place to shop for 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.
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/giving/bbs#C
BBS Adults Facebook page
This is a place for adults with 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
New date: BBS Young Adult Group: Monday, November 8 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. We will be sharing ideas on everything from cooking, to shopping, to managing money. We will explore technology and adaptive tips and tricks, as well as discussing transitions from high school to 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, November 19 at 7:30 pm Central Time
Co-moderated by Katherine Stewart and Ellyn Hunter. The movie for November is Willy Wonka and the Chocolate Factory, directed by Mel Stuart and starring Gene Wilder, Jack Albertson, and Peter Ostrum. Description: The world is astounded when Willy Wonka, for years a recluse in his factory, announces that five lucky people will be given a tour of the factory, shown all the secrets of his amazing candy, and one will win a lifetime supply of Wonka chocolate. Nobody wants the prize more than young Charlie, but as his family is so poor that buying even one bar of chocolate is a treat, buying enough bars to find one of the five golden tickets is unlikely in the extreme. But in movieland, magic can happen. Charlie, along with four somewhat odious other children, get the chance of a lifetime and a tour of the factory. Along the way, mild disasters befall each of the odious children, but can Charlie beat the odds and grab the brass ring?
Here's how it works. You'll watch the movie before we get together, and then at 7:30 pm Central Time on Friday, November 19, we will get together on the Marshfield Zoom site to talk about the movie. This movie is on Sero. You can also look for it 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:
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, November 15 at 7:00 pm Central Time
Please join us for the BBS parents support group in November. 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. Topics for the November meeting will as always be any issues that parents want to discuss. We will also discuss the upcoming holidays and how to deal with diet issues around all of the holiday food. 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:
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 (date moved for November only): Friday, November 12, 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. On November 12, we will reading If the Shoe Fits, by Julie Murphy. Description: Cindy dreams of becoming a shoe designer. But when a spot opens up on her stepmother's famous reality TV dating competition, Cindy is thrust into the spotlight as the show's first plus-size contestant. She can't help but fall for Henry, the man all the contestants are vying for.
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: 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 November 4, 11 and 18, and Wednesday November 24, 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, November 10 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:
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, November 6, 13, 20, 27 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 Saturdays at 12:00 noon Eastern Time, using the Marshfield Clinic 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: 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, November 21, 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:
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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