Dear BBS Family,
Happy Memorial Day (United States) and to all BBS Family members regardless of your homeland. I want to express my deepest appreciation to all those that have made freedom possible through your sacrifice and service. It was during my service in the United States Air Force as a pediatric nephrologist that I met my first individual with BBS. That was life-changing.
One of the exciting things to let the entire BBS community know about is that we will have in the coming month a WebEx international phone number so regardless of your location in the world you will be able to participate in any of the discussion groups listed below. Please know that individuals interested in participating in the BBS Sports Group or Young Adult Group can do so now regardless of your location.
Finally, I want to acknowledge the terrific people that I get the opportunity to work with. This picture below shows three of the amazing people. They are research coordinators in the Center of Excellence for BBS at the Marshfield Clinic. They are remarkable people. Lauren, on the left, will be leaving this month to begin training as a physician. She will be amazing. Nathan is a future physician assistant. On the right is Thomas. Thomas is a hero. He donated one of his kidneys this last month to a young man in a family affected by BBS. I have the privilege of working with so many wonderful people! Not shown here are Deb, Kellie, Jeremy, Sonia, Jesse, Dick, and Missy (our newest member) as well as wonderful physicians, psychologists, neuropyschologists, dentists, dieticians, therapists, genetic counselors, nurses, technicians, and medical assistants and so many more amazing people that make the Center of Excellence possible.
Save the dates for the BBSFA Virtual Conference!
Join us each week, starting July 17 to get the latest updates on BBS, hear from leading experts about cutting-edge research, ask questions of doctors and specialists who have experience treating lots of people with BBS, and connect with and learn from other BBS families.
Registration will open soon. Any questions can be directed to Alexis Zydyk: alexis@bardetbiedl.org
Upcoming Events
Fundraising: BBS Family Cookbook
Stay tuned. We are very excited about the recipes in our forthcoming cookbook. It should be available in June. Information about how to download will be coming out soon. All proceeds from donations will go to support BBS research at Marshfield Clinic.
The BBS Families Store: Ongoing
The Families Store is a great place to shop for T-shirts, sweatshirts, coffee mugs, hats and gifts. Check out the new designs and products at https://www.cafepress.com/bbsfamilyshop. All profits from the BBS store will directly support BBS Research at the Center of Excellence for BBS.
Social Media
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/
Groups
BBS Movie Night: Friday, June 18 at 7:30 pm Central Time
Co-moderated by Katherine Stewart and Ellyn Hunter. The movie for June is When Harry Met Sally, a comedy starring Meg Ryan and Billy Crystal and directed by Rob Reiner. Description: In 1977, college graduates Harry Burns (Billy Crystal) and Sally Albright (Meg Ryan) share a contentious car ride from Chicago to New York, during which they argue about whether men and women can ever truly be strictly platonic friends. Ten years later, Harry and Sally meet again at a bookstore, and in the company of their respective best friends, Jess (Bruno Kirby) and Marie (Carrie Fisher), attempt to stay friends without sex becoming an issue between them.
Here's how it works. You'll watch the movie before we get together, and then at 7:30 pm Central Time on Friday, June 18, we will get together on the Marshfield conference call system to talk about the movie. This movie is not on Sero, but it is quite watchable without the narrative descriptions. You can 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.
Log-in info for the conference call:
Call 877-998-0997 (toll free only in the United States and Canada)
Wait for the prompt and then enter the Call ID: 046618107 followed by the pound sign
BBS Parents Support Group: Monday, June 14 at 7:00 pm Central Time
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. 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. The June 14 call will be open to any topic that parents would like to discuss. I’m sure we will talk about COVID vaccines for children too. We look forward to connecting with and supporting each other during these difficult times.
The group meets the second Monday of each month at 7:00 pm Central Time, uisng the conference call system at Marshfield Clinic. For more information, contact Maxie at 2themax03@gmail.com
Log-in info for the conference call:
Call 877-998-0997 (toll free only in the United States and Canada)
Wait for the prompt and then enter the Call ID: 046618107 followed by the pound sign
BBS Young Adult Group: Saturday, June 12 at 4:00 pm Eastern Time
Facilitated by Joelle Swyka. This is a group for young adults ages 18-30. We meet on the second Saturday of the month at 4:00 pm Eastern Time for discussion and conversation. 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 is now meeting on Google Meets: https://meet.google.com/npp-jebf-tqv For new members, before joining the group, contact Joelle at joeswyka@gmail.com
BBS Book Night: Friday, June 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 conference call system at Marshfield Clinic. On June 4, we will reading Buried in a Bog, by Sheila Connolly. Description: Honoring the wish of her late grandmother, Maura Donovan visits the small Irish village where her Gran was born - though she never expected to get bogged down in a murder mystery. Nor had she planned to take a job in one of the local pubs, but she finds herself excited to get to know the people who knew her Gran.
In the pub, she's swamped with drink orders as everyone in town gathers to talk about the recent discovery of a nearly one-hundred-year-old body in a nearby bog. When Maura realizes she may know something about the dead man - and that the body's connected to another, more recent, death - she fears she's about to become mired in a homicide investigation. After she discovers the death is connected to another from almost a century earlier, Maura has a sinking feeling she may really be getting in over her head…
Log-in info for the conference call:
Call 877-998-0997 (toll free only in the United States and Canada)
Wait for the prompt and then enter the Call ID: 046618107 followed by the pound sign
BBS Sports Club: Thursdays, June 3, 10, 17, and 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 (Pacific Time) 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.som to get the current Zoom login information.
BBS Women’s Group: Wednesday, June 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 conference call system every third Wednesday at 7:00 pm Central Time. For new members, before joining the group, contact Ellyn at ellynhunter@charter.net
Log-in info for the conference call:
Call 877-998-0997 (toll free only in the United States and Canada)
Wait for the prompt and then enter the Call ID: 046618107 followed by the pound sign
BBS Weight Watchers Group: Saturdays, June 5, 12, 19, and 26 at 12:00 noon Eastern Time
Facilitated by Jane Perry, this is a weekly group for both men and women 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 may include a short video through YouTube, with the majority of the time devoted to sharing ideas, recipes, and experiences. The group meets Saturdays at 12:00 noon Eastern Time, using the Marshfield Clinic conference call system.
Log-in info for the conference call:
Call 877-998-0997 (toll free only in the United States and Canada)
Wait for the prompt and then enter the Call ID: 046618107 followed by the pound sign
BBS Adult Discussion Group: Sunday, June 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 conference call system every third Sunday at 7:00 pm Central Time. For new members, before joining the group, contact Ellyn at ellynhunter@charter.net
Log-in info for the conference call:
Call 877-998-0997 (toll free only in the United States and Canada)
Wait for the prompt and then enter the Call ID: 046618107 followed by the pound sign
Warm regards,
Dr. Bob Haws and the members of the Center of Excellence for BBS
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