Dear BBS Family,
2020 is coming to an end. I think all of us are happy to say “Good Bye” but it was a year marked by noteworthy progress giving new hope to individuals affected by BBS. Here are some very important accomplishments:
- Leaders of BBS organizations from across the world came together to create BBS International. Bringing us together is a gigantic step forward. This is huge!
- COVID-19 didn’t stop us from holding a virtual BBS Conference as experts shared knowledge and insight using weekly Internet broadcasts between July and September.
- The Clinical Registry Investigating BBS (CRIBBS) continued to grow. We now have 615 participants in countries across the world. Hundreds of interviews were conducted and critical health information collected in 100% confidential manner.
- Five great publications in the 2019-2020 fiscal year were authored by members of the Center of Excellence for BBS and the Marshfield Clinic Research Institute in collaboration with experts across the world.
- The exciting impact of setmelanotide to help individuals with BBS lose weight was published in 2020 in a phase 2 clinical trial conducted in 10 individuals with BBS.
- The phase 3 setmelanotide clinical trial was nearly completed in 2020.
- Setmelanotide is now approved by the Food and Drug Administration for prescription in the US for three conditions other than BBS. We are hoping that setmelanotide will be approved for the treatment of individuals with BBS in the coming year in multiple countries.
- We held discussion groups at least monthly (Young Adults, Women’s Group, Adults with BBS, Weight Watchers Group, BBS Email Exercise Support Group and Sports Group). Please see information below from Ellyn Hunter. These groups have made the BBS world a little less lonely.
- Using information from CRIBBS we are helping BBS experts find new therapies and gain new insights in BBS. Thank you for making CRIBBS a vibrant growing international registry.
I am especially pleased that our partner, the Bardet Biedl Syndrome Foundation & Family Association, has recently brought on a new Project Manager, Alexis Zydyk. Alexis holds four years of experience in nonprofit management and digital media. She hopes to use her skills to further the mission of the foundation by connecting families and sharing information on research, therapies, and care for Bardet Biedl Syndrome. For more information about the Foundation and Family Association, please contact Alexis at firstname.lastname@example.org. Check out the updated webpage at bardetbiedl.org
Hold on… 2021 will be exciting as we work together to make a difference for individuals and families affected by BBS.
Now for some more updates
BBS Walkathon page is still open: In answer to a question that came in regarding the First BBS Virtual Walkathon, which was held in mid-October, yes the donation page is still open until the end of the year and you can donate on it if you want to do this for an end-of-year tax deduction or anything else. The Walkathon raised almost $36,000, and all the money is going to support research for BBS at Marshfield Clinic Research Institute. Here is the URL:
The BBS Families Store: This online store is a great location where you can purchase a wide variety of items that you might want to consider as a birthday gift or Christmas present or just something fun for yourself such as a T-shirt or coffee mug. Check it out at:
There are three logos to choose from on the store items: two hands forming a heart, two hands holding puzzles pieces, and a word mashup. The first two logos are surrounded by the message “BBS Families—Together We Make a Difference.” All profits from the BBS store will directly support BBS Research at the Center of Excellence for BBS.
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.
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.
BBS Book Night: Friday, January 8 at 7:00 pm Central Time. BBS book night meets the first Friday of every month at except when there is a holiday. The book is always available from BARD, and usually from Audible, local libraries, and possibly Bookshare. To join the group, call 877-998-0997 (toll free only in the U.S. and Canada); wait for the prompt and then enter the Call ID: 046618107 followed by the pound sign. In January, we will be reading Dating Dead Men, by Harley Jane Kozak. Description: Los Angeles greeting-card artist Wollie Shelley is dating forty men in sixty days as research for a radio talk-show host's upcoming book. Wollie is meeting plenty of eligible bachelors but not falling in love, not until she stumbles over a dead body en route to Rio Pescado - a state-run mental hospital - and is momentarily taken hostage by a charismatic "doctor" who is on the run from the Mob.
BBS Sports Club: Every Thursday 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. We currently have 8 club members. Weekly meetings enable participants to talk sports in a fun, social way. Meetings include contests where members compete for prizes and prestige. Currently, contests relate to the weekly NFL football games leading up to the Super Bowl, and soon will include college basketball and March Madness.
BBS Sports Club meetings are via Zoom and scheduled for 5 PM (PST) to 5:45 PM (PST) every Thursday except for holidays. Where a holiday falls on a Thursday or Friday, the meeting is scheduled for Wednesday. Join the Zoom meeting: https://zoom.us/j/97834727752?pwd=eW5SMjVZZVc4WWFNNW5xMm9odnBDUT09
BBS Weight Watchers Group: Every Saturday at 11:00 am Central Time. This is a weekly group for those who are already signed up for Weight Watchers 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 will sometimes include a short video through YouTube, with the majority of the time devoted to sharing ideas, recipes, and experiences. The group meets Saturday mornings at 11:00 am Central Time. To join the group, call 877-998-0997 (toll free only in the U.S. and Canada); wait for the prompt and then enter the Call ID: 046618107 followed by the pound sign.
BBS Young Adult Group: Saturday, January 9 at 4:00 pm Eastern Time. This is a group for young adults ages 18-25. We meet on the second Saturday of the month 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 meets by telephone conference call. For more information, contact Joelle at email@example.com
BBS Adult Discussion Group: Sunday, January 10 and 31 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 telephone conference call every third Sunday. For more information, contact Ellyn at firstname.lastname@example.org
BBS Women’s Group: Wednesday, January 20 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 telephone conference call every third Wednesday at 7:00 pm Central Time. For more information, contact Ellyn at email@example.com
BBS email exercise support group: This is a great way for adults to keep motivated and accountable on their exercise. It's an individual, low pressure approach with everyone picking their own exercise routine and simply using the group to report what they're doing. On Sunday night Ellyn Hunter sends out a group email to those who are participating, asking them to post their goals for the week, and then during the week people "reply all" to the group, telling everyone what they've done. For anyone who would like to join, all they have to do is send Ellyn an email at firstname.lastname@example.org and she will add them in.
Bob Haws, M.D.
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