- 1/5/20: We met at the Tamkin Auditorium in UCLA’s Ronald Reagan Medical Center to hear presentations on cannabis (medical marijuana). Dr. Ziva Cooper, PhD of the UCLA Cannabis Research Initiative presented on the history and current state of cannabis research and access for medical or recreational purposes. Rheumatologist Dr. Veena Ranganath MD then presented rheumatology specific studies on cannabis. They are running a pacebo controlled study on CBD and RA. UCLA. n=33.
- 11/9/19: Speaker: Reflexology, Rhonda Funes. Applied reflexology principles for spondyloarthritis. SAA office location. n=5.
- 10/12/19 (Saturday): Roundtable discussion in West LA, TY Greg for hosting the meeting. Discussion topics included: How does knowing you carry the HLA-B27 gene affect your deicison to have children? Enthesitis – What do people do for pain, especially when prescribed treatment isn’t working? Service dog to help with AS mobility. Watsu: water massage to help with pain. Biologics: pros and cons for a new patient being advised to go on a biologic for AS. Abridge – smartphone app to record conversations with doctors (in California, you apparently don’t need to get permission from your doctor to record), and it creates a summary of each conversation for you. n=9
- 9/8/19: Super interesting Interactive “roundtable” discussion on several topics. We were able to get to know each other at this meeting. As usual, a variety of people in the room which made it easy to support and relate to others on every subject. Some had long standing disease and some diagnosed last year (from Dx in 1988 to 2018). Some had uveitis, some IBD, some with skin issues, some with peripheral disease. Some not taking medications, some taking several (including biologic/MTX/steroid injections). Many have tried several biologics. Of the 6 people satisfied with the results of their current biologics, they were taking one of five different medications (either Cimzia, Remicade, Enbrel, Cosentyx, or Humira). Two people with long standing AS were very satisfied with the results using nonmedicinal holistic approaches. One person ran a half marathon yesterday, one person lives with a chronic ‘8’ pain level and is challenged enough to make it through the day, one feels no pain. SAA office location. n=9
- 8/11/19: Speaker: Naturopathic Medicine Physician, Dr. Vyacheslav Alec pekler, NMD, MS, CST, presented on naturpathy medicine and how it relates to spondyloarthritis disease. Dr. Pekler discussed naturpathy medicine, reviewed general approach to medical care, specific approach to AS. click here for his presentation pdf. There was also a discussion regarding women with AS and hormones, there was a related study done on this. SAA office location. n=10
- 7/14/19: Speaker: Physical Therapist, Stacy Barrows, PT, DPT, GCFP, PMA-CPT. presented on self-care. ‘Selfcare is a key to living a balanced life. Using the biosocial model, there are options during pain, including persistent pain, and with limitations. These are tools physical therapists use all the time.’ Stacy provided an overview as well as several specific approaches. West Los Angeles location. n=15
- 6/9/19: Interactive discussion. Several topics discussed including: our family members with related conditions; uveitis and other eye issues; One person discussed their diagnosis that came after years of digestive issues and then an acute digestive issue during their trip to Mexico which let him to look into antibiotics. Another person had a severe back injury as a child and for years all back issues were attributed to that. Some people shared what things they ‘track’ such as sleep/deep-sleep, steps, temperature, blood pressure, food intake, etc. We discussed whether we should host a meeting just for spouses, significant others, family and friends. SAA office location. n=7
- 4/14/19: The first half of the meeting was an interactive discussion on topics people had on their mind including questions regarding any consequences for long time use of TNF inhibitors and parenting while living with AS. Rheumatologist, David Yu, MD then facilitated a discussion on stress and spondylitis. Exploring people’s perception between stress and disease activity. Times in our lives when life’s stress coincided with extreme flares. Dr. Yu discussed different type of stress, how various personality traits -such as introvert/extrovert- have different inclination towards stress. In addition, we discussed methods for reducing stress. West LA location. n=26
- 3/10/19: Clinical Nutritionist, Michelle Schirra presented on diet, supplements, and nutrition. She explained what a clinical nutritionist does and how important it is for her to develop an individual plan after an assessment with a new patient. The meeting was held in Van Nuys. n=25.
- 2/10/19: Informative, interesting and supportive meeting at this West LA meeting (San Vicente & Wilshire). Each person shared their experiences over a variety of topics including decision making regarding diet, biologics, and supplements. Expectations for the future. Parenting teens with AS. Experiences regarding what Uveitis feels like and treatments. Colds and infections with and without biologics. Where else can you share to a room full of people that have the disease what it feels like to actually see your spine ankylosing on lab imaging, or share the apprehension to seeing old classmates at a reunion after becoming kyphotic & fused. Some people are completely fused from si to head, others have some fusing, some not fused at all, some are relatives of people that have SpA. n=14
- 1/13/19: 2019 is off to a wonderful start! Lively & supportive interactive discussion on a whole host of topics including chances of parents with AS having children get AS, recommendations of local rheumatologists, water exercises and other activities, experiences with medications and diet. Diverse group in terms of age, length of disease, severity of disease, gender, ancestry, and current pain levels. In addition to people that have spondylitis, we had a parent, spouse, significant other and a health care provider (nutritionist). n=14
- 12/9/18: Our first meeting in West Los Angeles – an Interactive Discussion “Roundtable meeting” held in a residential community meeting room in Playa Vista. Topics covered included Movement and Exercise – particularly Water Therapy and Pilates; the importance of correct posture to help relieve stress on the body; alternative pain management techniques, including Transcutaneous Electrical Nerve Stimulation (TENS) and Capsaicin Topical Creams (prescription compounded strength); the role of diet in disease management, and different diets that are popular with AS patients including Low Starch, Gluten Free, Dairy Free and Ayurvedic; and prescription meds (particularly biologics) vs. non-medical disease management. Thank you Kate for hosting the meeting. n=12
- 10/14/18: Allan I. Frankel, MD (GreenBridge Medical) presented (slide deck) and answered questions on cannabis as a treatment for axial spondyloarthritis. (medical marijuana). Meeting held at a local restaurant, Lulu’s. Refreshments sponsored. n=26
- 8/12/18: Rheumatologist, Glenn Ehresmann, MD Keck School of Medicine University of Southern California (USC) presenting on AS signs, symptoms and what can be done about it. Dr. Ehresmann answered all questions throughout the presentation. Meeting was held at a the Marriott and sponsored by AbbVie. n=18
- 7/8/18: Amy Muscoplat presented the topic of the ‘Power of Positivity While Living with Spondylitis’. This isn’t Pollyanna approach, but it is choosing to consciously make the decision to ‘hit the breaker switch’ to not go to a negative spiral. We don’t have the luxury of negative thoughts that create additional stress that then exacerbates the disease. Several tips were shared including ways to take your mind off of pain for a little while. positive statements, talking with positive people, practicing gratitude, etc. Resources on the topic: happiness lecturer, flow, mindfulness, YouTube videos & more.
- 6/10/18: Interactive Discussion “Roundtable meeting”. Held at the Courtyard Marriott Hotel. Discussion included how to find research studies; What physical therapy exercises would be appropriate for AS?; Dx’d at 20 & having trouble finding work; Diet; Medical cannabis; Body ph balance: Essential oils, Capsaicin compound; Yoga, Tai Chi and Qigong. SWIFT website (teens). Dr. Yu is looking for people living with AS that he can interview regarding how the process of diagnosis, or how the diagnosis itself has changed their lives. Please contact him at firstname.lastname@example.org if this is of interest to you and to make arrangement to meet with him at your convenience. n=14.
- 4/8/18: Spondylitis Posture. Speaker: David Yu, MD Rheumatology UCLA. Poor posture is the cause of most chronic back & neck pain. Dr. Yu presented and discussed posture specifically for people living with spondylitis. With the assistance of volunteers, he showed how to evaluate our own posture and balance. Dr. Yu took questions and went over exercises to improve posture and balance. n=13
- 2/11/18: Spondylitis Relationships. Speaker: Cheryl Grenville, LMFT presentation of relationship issues discussed in literature pertaining for people living with a chronic painful diseases. Interactive group discussion on how spondylitis impacts the relationships that matter the most to us and methods of strengthening relationships including active listening. research update: NSAID use, AS and cardio issues. After refreshment break, people discussed with the group a variety of experiences and requests for living tips. medications, opioids, cannabis, reactions, types of exercise (strength, balance, cardio, range of motion), upcoming meetings and topics, etc. n=18
- 12/10/17: Financial Advisor, Adam Inlander, presented on decision making processes regarding family, home, health, leisure goals and then offered financial strategies for those goals. Living with a chronic and lifelong disease can affect all areas of our lives including, of course, financial.
- 11/4/17: San Diego patient education seminar with an international leader of spondylitis research & clinician John D. Reveille. World premeir of the latest This AS Life Live episode with guest star, Angel, sharing his experience working with Dan Reynolds and answering questions. Also physical therapist that has extensive experience working with spondylitis patients, Angelo Papachristos. The recorded seminar will be loaded to this page: http://www.spondylitis.org/Seminars-and-Webinars
- 10/8/17: Rheumatologist Robin Dore, MD presentation on ankylosing spondylitis including information on the IL-17 inhibitor, Cosentyx. A person living with AS shared her story as part of the [harma sponsored, Make My Move, program. After the program the group had a robust interactive discussion ’roundtable’ including description of the type of pain people experience at various times, such as ‘acute’ versus ‘chronic’, ‘burning’ versus ‘beat-up’, ‘location specific’ versus ‘general’ and ‘radiating’.
- 8/13/17: Dawn Hassmann, certified hypnotherapist discussed hypnotherapy and tapping, its application to central pain and answer questions. Dawn lead an extensive demonstration of tapping to enable people to practice at home. Afterward a refreshment/stretch break, the group discussed a variety of issues including a candid conversation regarding the decision making process to have children and parenting issues.
- 6/11/17: Discussion on fatigue (causes and management tips), medical marijuana, diet and AS, opioids, physical therapy and other activities (including yoga), what to do if extended family members don’t seem to understand limitations due to AS.
- 5/13/17: Patient Education Seminar in San Francisco. Three experts in spondyloarthritis presenting and fielding questions in this in-person seminar. Rheumatologist, Physical Therapist and Integrative Medicine physicians.
- 4/23/17: roundtable discussions on massage (deep tissue), tens unit, steroid shots, eye inflammation. Discussed sources to prepare for discussions with physician such as the SAA & NIAMs website; texts such as Axial Spondyloarthritis edited by Rober D. Inman and Joachim Sieper and also Ankylosing Spondylitis by Muhammad Asim Khan.
- 2/12/17: roundtable discussions that included learning more about the experiences with symptoms, diagnosis, treatment and life impact from the dozen people in the room. Once again, we were fortunate to have people with a wide variety of experiences from just diagnosed to diagnosed decades ago. Also, a wide variety of treatment approach experiences. Common experiences with symptoms were shared. Discussion regarding newly diagnosed reaction and expectations regarding career, family and quality of life going forward. Discussion regarding the decision making process for a person considering the medication options presented by their rheumatologist. Discussion regarding experiences with healthcare plans and medical professionals in the area.
- 12/11/16: The Feldenkrais Method presented by Dr. Stacy Barrows, PT, DPT, GCFP, PMA-CPT. “The Feldenkrais Method® is a form of somatic education that uses gentle movement and directed attention to improve movement and enhance human functioning. Through this Method, you can increase your ease and range of motion, improve your flexibility and coordination, and rediscover your innate capacity for graceful, efficient movement. Feldenkrais ® is taught with two modalities: verbally-coached Awareness Through Movement ® group classes or an individual “hands-on” session with a certified practitioner.”
- 10/9/16: roundtable discussions regarding: Local ankylosing spondylitis study (at Cedars); HLA-B27 (the good and bad); Inflammation blood tests (ESR & CRP); Micorbiome; Diets, tumeric and other antiflammatory supplements; NSAIDS & biologics; biomechanical and other stress affects on spondylitis; Feldenkais method of physical therapy; airplane travel with spondylitis.
- 9/11/16: Treatment for central pain for the AS patient. Researchers propose that 20% of people with AS have pain contributed by fibromyalgia. Rheumatologist David Yu, MD presented how this pain differs and treatments most effective for that type of pain, including cognitive behavior therapy, meditation and yoga.
- 7/10/16: Medical Cannabis & Spondylitis presentation by Allen I. Frankel MD “one of the world’s leading authorities on dosed cannabis medicine”. Presentation on medical marijuana followed by extended Q&A. 1/3rd of the meeting set aside for informal conversations between attendees and also some spondylitis issues addressed to the entire group. For example, one person asked if who could recommend a physician in her medical plan. Another person was recently Dx with AS and wanted to hear from others with experience taking a biologic medication and also others experience with diet and complementary treatments. Click for Dr. Frankel’s handout.
- 5/21/16: Join the Live Stream Spondylitis Education Seminar held in Dallas, TX. 10:45am Rheumatologist, John J. Cush, MD presentation followed by Question & Answer period on Medical Management of Spondylarthritis. 1:00pm Anesthesiology and Pain Medicine Specialist, Robert Overbaugh, MD presentation followed by Question & Answer period on Comprehensive Approach to Pain Management.
- 4/10/16: Discussions on triggers, medications (including the new IL-17 and biosimilar), best time to exercise, eye surgery, watching archived SAA webinars on YouTube, the new spondylitis awareness campaign using white board animation. Click here to see the awareness video.
- 3/12/16: “Ask the Spondylitis Researcher” webinar with Dr. John D. Reveille. Webinar held the same weekend as our regular meeting weekend.
- 2/ 13/16: Robust discussion regarding how to generally manage and monitor the disease.
- 1/10/16: Wide range of topics including factors that went into the decision making process for taking medications. Shared experiences with Humira. Looking back at what our first symptoms of SpA were (ie low back, not sleeping through the night, heel/foot pain). Welcomed attendee from Mexico City and discussed how Dx & treatment experiences are similar and different in Mexico. Shared resources available on SAA YouTube channel ‘SpondylitisDotOrg’ including the Los Angeles stars on the Pt Seminar video from Altadena and the MRI webinar. Developed speaker list. TY to everyone that brought refreshments!
- 12/13/15: Ben Klinger presented issues & resources related to disability insurance and long-term care. A wide variety of spondylitis issues were discussed in the second half of the meeting including career modifications, relationships, medication and disease complication experiences.
- 10/11/15: Rheumatologist, Dr. Adam Kreitenberg provided a ‘tour of spondylitis/spondyloarthropothies through pictures’ including how spondylitis is diagnosed, treated and the associated complications. All questions from the group were answered. After the presentation, we discussed various living with spondylitis topics including how to find a new rheumatologist with spondylitis experience.
- 9/13/15: Discussed all topics raised by attendees including: how to find a local doc without insurance, prolo tx, iritis, muscular tightness, marijuana, Disney 1/2 marathon fundraiser, depression, insurance, naturapath, diet, acupuncturist, spine disc surgery & infection.
- 8/9/15: Licensed acupuncturist, Cindy Antoun, L.Ac. presented ‘acupuncture and spondyloarthritis’ including the risk, benefits, science and art of practicing acupuncture. Ms. Antoun holds a Master’s Degree in Acupuncture and Oriental Medicine and owns a local private practice.
- 6/14/15: Dr. David Yu provided an information packed and thought provoking presentation on Central Pain, Fibromyalgia and Spondyloarthritis.
- 5/10/15: Dr. Boris Ratiner presented Psoriatic Arthritis and Spondyloarthritis. Dr. Ratiner also provided insight into his decision to enter the specialty of rheumatology and running a private rheumatology practice.
- 4/12/15: Wide variety of topics including: nerve pain in the legs; whether having more than one generation of family with AS increased the odds for the next generation, and whether it makes sense to have them tested for the HLAB27 gene; diets; uses for Voltaren gel; the importance of awareness activities; and imaging in early diagnosis.
- 3/21/15: Spondylitis Educational Seminar in Altadena with 3 speakers: Rheumatologist David Hallegua, Physical Therapist Sturdy McKee and Ophthalmologist Olivia Lee. Recap, and video archive of this seminar are available on SAA’s homepage & YouTube channel. click here for quick link to Dr. Hallegua’s presentation and Q&A.
- 2/8/15: Speaker Robert Overbaugh M.D. presented new therapies and multidisciplinary approach in pain management followed by an extensive question and answer session. Doctor Overbaugh is a pain physician and fellow spondylitis patient.
- 1/11/15: Speaker, Rhoyge Traylor discussed how insurance companies, pharmacies & government policies affect spondylitis. The critical role of the patient advocate in shaping policy. How to get involved including SAA’s alerts.
- 12/14/14: Pre-meeting, small group “Chat with an Expert” with Dr. David Yu. Also pre-meeting, private and semi private yoga practice with Richard Howard. Meeting discussions included endometriosis, benign tumors, pregnancy/new borns and AS. Much of the meeting compared experiences and ages from early symptoms in childhood, through first major flare, to diagnosis. We also looked at family members with related issues, HLA-B27, length of time without symptoms.
- 11/9/14: Speaker on Long Term Care Health Insurance & Spondyloarthritis followed by group discussion on various spondylitis topics. Pre meeting private yoga lesson.
- 10/12/14: Round Table Discussions included: Building healthy habits including exercise and diet. Sharing wins in improvement and progress. What causes flare-ups? What supplements are people taking
- 9/14/14: Alternatives to TNFi’s & NSAIDS, Group Exercise, diet, psychological approaches. Pre-meeting ‘Chat with an Expert’ by Dr. Yu. Pre meeting private yoga lesson.
- 8/14/14: Pre-meeting yoga practice. Invited Speaker, renowned Rheumatologist Dr. David Yu: “Chat with an Expert”, small groups (2-3 people) had a chance to discuss their spondylitis related issues with an expert. Round table discussion: What can you do when biologics and NSAIDS are not enough?
- 7/13/14: Round Table Discussion included tips when switching from one TNFi to another. The toll Spondylitis plays takes on relationships. Finding the will and ability to exercising when in pain.
- 6/8/14: Invited Speaker: Tai Venuti, MPH. Tai presented on SSDI, SSI and Spondyloarthritis. (See ‘Notes from Past Meetings’ below for the power point presentation). Also round table discussion included: experiences with Simponi & Humira, Fundraisers such as Walk-A-Thons & Comedy Night, the ‘Catch 22’ of not feeling well enough to exercise, experiences with spouses expectations and support.
- 5/4/14: Chronic pain & fatigue effects on maintaining friends and social networks and avoiding isolation; herbs; sympathetic nervous system, vitamins; medical marijuana; TNFi injection devices; weight lifting; restorative (yin) yoga.
- 4/13/14: Invited Speaker: Howard Wax MA, MED, LMFT. Howard presented on the Psychological Immune System. Video of work done at UCLA on brain imaging activity, pain levels, and visualization techniques. Discussed ways to change the dialogue surrounding goals and pain.
- 3/9/14: Round Table Discussion included ‘Tips for the newly diagnosed’, ‘911: Emergency First Responders & Ankylosing Spondylitis (AS)”, diet, exercise, medications, hip surgery, hand pain.
- 2/9/14: Invited Speaker: Eleni Tsikrikas, Clinical Ayurvedic Specialist and PanchaKarma Specialist. Topic: The Ayurvedic Medicine Approach to Spondylitis. (Ayurvedic Medicine is a system of traditional medicine native to the Indian subcontinent.)
- 1/12/14: Invited Guest: A.S. Clinical Research Coordinator, Kristina. Kristina presented on tools used to measure range of motion. The group discussed tips to reduce injection site reactions, and shared personal journeys from symptoms to diagnosis, to treatments, to today.
- 12/8/13: The new TNFi, local rheumatologist recommendations, isolation, diet, inversion tables, exercise and alternative care.
- 11/10/13: ‘Round Table Discussion’ the group fielded all the issues brought up by attendees.
- 10/13/13: Dr. Yu’s presentation: ‘How To Assess & Control Cardiovascular Risks’. Jessica Wang’s Interactive presentation: ‘Exercises for stability and core strength’.
- 9/8/2013: ‘Round Table Discussion’ the group fielded all the issues brought up by attendees.
- 8/14/13: Discussions included: Medications overview, tips for switching TNFi, diet theories, traveling with AS, impressions and recollections from the SPARTAN Annual Conference (Spondylitis Research And Treatment Network), personal stories & experiences, etc
- 7/14/13: ‘Round Table Discussion’ including diet, microbiome, exercise, supplements, fatigue, TNFs, personal stories, etc.
- 6/9/13: Speaker: Anthony Elliot, Insurance Issues including Affordable Health Care & the California Exchange System.
- 5/19/13: Speaker: Tiffany Fraser certified Anusara Yoga Instructor. (this meeting is the 3rd Sunday of the month, so our meeting would not conflict with Mother’s Day).
- 4/14/13: Round Table Discussion including planning a life around AS. Balancing relationships, school, work even trips without knowing when a flare will hit. Spoon theory. Personal AS stories.
- 3/10/13: Speaker: Tiffany Westrich (IAAM), autoimmune diseases.
- 2/10/13: Basic SpA Management
- 1/13/13: Speaker: Dr. Weisman, AS clinical Dx, Treatments.
- 12/2012: Video: Dr. Weisman part 1 overview of SpA
- 11/2012: First Meeting – Q&A, setup admin
Notes from past meetings:
Aug 2019 | Oct 2018 | April 2018 | April 2014 | March 2014 | July 2013 | June 2013 | May 2013 | February 2013 | January 2013 | December 2012
Videos of Jan 2020 Dr. Cooper from the UCLA Cannabis Research Initiative:
6630 – LA Support Group Presentation – Cannabis: About Ziva Cooper, Ph.D. – https://youtu.be/cBjNa4bAVCs
6631 – LA Support Group Presentation – Cannabis: Intro – https://youtu.be/xmCRDwc6QCM
6632 – LA Support Group Presentation – Cannabis: Funding Source & Disclosure – https://youtu.be/FdA3r_TaGSk
6633 – LA Support Group Presentation – Cannabis: Overview – https://youtu.be/f52DhNvhTMI
6634 – LA Support Group Presentation – Cannabis: Propaganda – https://youtu.be/BvijWFYh28k
6635 – LA Support Group Presentation – Cannabis: Legalization – https://youtu.be/lWEQCDtulDw
6636 – LA Support Group Presentation – Cannabis: What is Cannabis? – https://youtu.be/aJEdLGtw1kk
6637 – LA Support Group Presentation – Cannabis: Emerging Trends Part 1 – https://youtu.be/lqyfsQDTWJY
6638 – LA Support Group Presentation – Cannabis: Emerging Trends Part 2 – https://youtu.be/Yg7s0lENqns
6639 – LA Support Group Presentation – Cannabis: Demographics – https://youtu.be/Xnj3o67-Yuo
6640 – LA Support Group Presentation – Cannabis: Therapeutic Effects – https://youtu.be/CYwM6xxPUMo
6641 – LA Support Group Presentation – Cannabis: Adverse Effects – https://youtu.be/A9CDjQrM_MI
6642 – LA Support Group Presentation – Cannabis: Cure or Concern? – https://youtu.be/5AeDMnPaSso
6643 – LA Support Group Presentation – Cannabis: Regulations – https://youtu.be/9rwEml2l5uc
6644 – LA Support Group Presentation – Cannabis: Use Disorder – https://youtu.be/xKCZM3BAIFM
6645 – LA Support Group Presentation – Cannabis: Why do research regulations exist? – https://youtu.be/sILaUHCsEJo
6646 – LA Support Group Presentation – Cannabis: Dependency – https://youtu.be/HsoM5fJwg1g
6647 – LA Support Group Presentation – Cannabis vs. Hemp – https://youtu.be/jqa3uNwxxJA
6649 – LA Support Group Presentation – Cannabis: Barriers to Research Progress – https://youtu.be/rwSex-rKkrA
6650 – LA Support Group Presentation – Cannabis: Annual Cannabis Research Symposium – https://youtu.be/QCjxiq1Zels