Dear BBS Family, Our apologies on the delay of providing this week’s presentation as we experienced a few technical difficulties. This week’s BBS Virtual Conference presentation features Casey Geddes from Rhythm Pharmaceuticals. As noted previously, Rhythm Pharmaceuticals had the opportunity to conduct market research with seven families living with BBS to learn more about their path to diagnosis and the impact of living with BBS. While every families’ journey is unique, there were some key similarities and findings in the research that Rhythm conducted. The findings in this presentation represent the first part of this market research study, as Rhythm is currently continuing the research with additional families and individuals. In addition, Tammi Timmler has answered questions submitted by individuals that listened to her presentation last week. The direct link for Tammi’s Q&A video is: https://youtu.be/ZAQgED4KZ2M As a reminder, you can find past presentations on the Marshfield Clinic Health System YouTube channel under the BBS playlist: https://www.youtube.com/c/MarshfieldClinic/playlists. Please feel free to contact me with any questions or feedback at suda.sonia@marshfieldclinic.org. Next week’s presentation will feature Jeremy Pomeroy, PhD, Research Scientist at the Center of Excellence for BBS. Thank you, Sonia Suda, BS, RDCS Bob Haws, MD Dear BBS Family, The BBS Virtual Conference presenter today is Tammi Timmler, MS, RDN, CD, CDCES. Tammi is the dietician for the Center of Excellence. She provides great insight on dietary recommendations that can be helpful. I hope you will enjoy this week’s presentation. The direct link for today’s presentation is: https://www.youtube.com/watch?v=4-TW_It-XjE&list=PLQnU8Wce8oMcfjkWxzbYghDlja-UKJcEV&index=8 The direct link for the Q & A for Dr. Kelsi Offenwanger is: https://www.youtube.com/watch?v=xSqdDgcmZUY&list=PLQnU8Wce8oMcfjkWxzbYghDlja-UKJcEV&index=7 As a reminder, you can find past presentations on the Marshfield Clinic Health System YouTube channel under the BBS playlist: https://www.youtube.com/c/MarshfieldClinic/playlists. The presentation from Dr. Drack will only be available for one more week. A summary of past presentation will be made available in French, Spanish and English. Best Wishes, Dr. Bob Haws Dear BBS Family, The BBS Virtual Conference presenter today is Dr. Arlene Drack. Dr. Drack is an amazing ophthalmologist and researcher who has championed the exploration of gene therapy in the treatment of vision loss in Bardet-Biedl syndrome and other forms of retinal degeneration. The direct link for today’s presentation is: https://youtu.be/aoMTjc7i5yM Dr. Nico Katsanis has answered the questions submitted by individuals that listened to his presentation. His Q & A responses are available at: https://youtu.be/TpaOQSh5dAA. As a reminder, you can find past presentations on the Marshfield Clinic Health System YouTube channel under the BBS playlist: https://www.youtube.com/c/MarshfieldClinic/playlists. Please send your questions for Dr. Drack to me at suda.sonia@marshfieldclinic.org. Dr. Drack will answer the questions submitted within the next two weeks. A summary of Dr. Drack’s presentation will be made available in French and Spanish in the immediate future. Best, Sonia Dear BBS Family, The BBS Virtual Conference presenter today is Dr. Kelsie-Marie Offenwanger. Dr.Offenwanger is a child & adolescent psychologist and member of the Center of Excellence for BBS. She offers amazing insights and guidance that all of us can benefit from hearing, especially in this time of COVID-19. The direct link for today’s presentation is: https://youtu.be/DYVspGl7HPU As a reminder, you can find past presentations on the Marshfield Clinic Health System YouTube channel under the BBS playlist: https://www.youtube.com/c/MarshfieldClinic/playlists. One exception is the presentation from Rhythm Pharmaceuticals, which can be found at https://rhythmtx.zoom.us/rec/share/x8NLf7beqFlOUM_NzhHkYqUlJaH6T6a80CdK_PQKz02zbvHhQwfW6kukJd_onqWE?startTime=1595434982000. This link will be active for one more week. Dr. Offenwanger also shared a valuable link with tips for managing anxiety during uncertainty of COVID 19. The link to that information is: https://shine365.marshfieldclinic.org/wellness/5-tips-for-managing-anxiety-during-uncertainty-of-covid-19/ In the near future, Dr. Katsanis will provide answers to your questions that you have submitted to Sonia Suda. We appreciate his amazing sacrifice of time to participate in the BBS Virtual Conference. Please send your questions for Dr. Offenwanger to suda.sonia@marshfieldclinic.org. She will answer the questions submitted by August 11th. Best wishes, Dr Bob Haws Hi BBS Family, I hope you are enjoying the 2020 virtual BBS Conference. This week we have the honor of hearing from Nico Katsanis PhD. Nico is a brilliant scientist that has made some of the most important scientific breakthroughs in understanding BBS. Dr Katsanis is leading the research to uncover the biology of BBS and find novel cures. We are delighted that he has provided this insight presentation available at the link below: Nico Katsanis 2020 BBS Conference YouTube Video As a reminder, you can find past presentations on the Marshfield Clinic Health System YouTube channel under the BBS playlist: https://www.youtube.com/c/MarshfieldClinic/playlists. One exception is the presentation from Rhythm Pharmaceuticals which can be found here. This link will be active for two more weeks. Please remember to send your questions for Dr. Katsanis to suda.sonia@marshfieldclinic.org. We will provide his answers in a follow up email available next week. Best wishes, Dr Bob Haws Dear BBS Community: Thank you to everyone who participated in the live presentation from Rhythm Pharmaceuticals last evening. If you were not able to join us, the link to the zoom recording as well as additional resources discussed during the presentation are highlighted below: If you have questions regarding the presentation, please contact Rhythm directly at patientadvocacy@rhythmtx.com or email me at suda.sonia@marshfieldclinic.org. We will email the link to the next YouTube presentation on Tuesday, July 28th. Thank you, Sonia Dear BBS Community, Tuesday, June 14, 2020 marked the beginning of our BBS Virtual Conference. During this presentation I will be providing an overview of the conference plans and introducing some of the anticipated speakers. I will be giving basic information about BBS genetics aimed to answer the question “What does my BBS gene name mean and why is it important to know?”. We will have weekly presentations for the next several months that will be great opportunities to learn. The YouTube link will be sent out each Tuesday by noon (US Central time & 5 pm UTC). Please email your questions for the speakers to Sonia Suda at suda.sonia@marshfieldclinic.org. The speakers will respond to your queries in a separate YouTube video the following week. One exception to that plan is July 21st. That presentation will be given via Zoom and will be a live presentation at 7 pm CST or midnight UTC. It will be video recorded and available for two weeks however questions can only be posed during the live presentation. Here is the link and we look forward to hearing your feedback on this wonderful opportunity to reach out to you, our BBS family! Dr Bob HawsWeek 7
Clinical Coordinator
Center of Excellence for BBS
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