The Los Angeles Education / Support Group

Upcoming Meeting(s)

Next Meeting:

Sunday, December 10, 2017

2:00 p.m. - 4:00 p.m.

Topic: 

  • Financial planning speaker. How to assess financial goals for what’s happening today and the future. 
  • With a 4-7 decade long disease, It's important to me to be good at managing all areas of my life, including finances. 
  • Adam will discuss how to make trade-offs in order to reduce (psychic) pain, increase pleasure and hopefully enjoy the experience. Discussing the goal specifics of family, health, home, work, leisure, and giving.

RSVP & questions: Richard@spondylitis.org

Meeting Location


Spondylitis Association of America

16360 Roscoe Boulevard

Suite 100

Van Nuys, CA 91406

Meeting Schedule

Meetings are from 2pm — 4pm on the second Sunday, roughly every other month.

Please confirm date/time and RSVP to Richard@spondylitis.org

  • August 13, 2017 
  • (hypnotherapist speaker)
  • September no meeting
  • October 8, 2017
  • (Rheumatologist speaker. includes information on a new medication treatment for AS & PsA. This meeting/program, called 'Making My Move', will be held at a different location, includes a light meal and is sponsored by a pharmaceutical company)
  • November  4, 2017
  • (Full length education seminar with expert speakers, Q&A & lunch in San Diego in conjunction with the American College of Rheumatology annual conference)
  • December 10, 2017
  • (Financial planning speaker. Topic: How to assess financial goals for what’s happening today and the future. How to make trade-offs in order to reduce (psychic) pain, increase pleasure and hopefully enjoy the experience. Discussing the goal specifics of family, health, home, work, leisure, and giving)

Group Leader

Richard Howard
(818) 892-1616 x231
richard@spondylitis.org

About Richard Howard, Los Angeles' Support Group Leader

Richard is on staff here at SAA. An SAA member since 1993, he joined our staff in 2012 as our Director of Corporate and Foundation Giving. He has since taken on the additional responsibilities of Associate Executive Director.  He came to us with over twenty years experience managing an eclectic array of nonprofits. He has worked with the homeless and impoverished, at an art residency center, at community centers and he has run religious institutions. He earned an MBA in nonprofit management and a BA in Sociology from UCLA.

Diagnosed with AS, Iritis and Ulcerative Colitis. Richard and his wife are both native Angelenos and have two children. Aside from spending time with his family and dog, Richard likes to practice/teach yoga, exercise, garden, attend sports/cultural events, and read.

What to Expect at a Meeting

To discuss any issue you have -related in some way to spondylitis- with others living with some type of spondylitis. We generally have two types of meetings, either 'roundtable' or 'invited speakers'. At a round table meeting,there is more opportunity to dive deeply into an issue and/or to raise a large number of issues of immediate interest to people in the room. The majority of our meetings will have an invited speaker that will share their expertise and field questions for at least half of the meeting. There is time set aside for private discussions with others around a refreshment table (including home baked) at all the meetings. We've had from 4 - 44 people attend a meeting. There are always people attending for the first time. Lately averaging 11 people attending; unless there is a speaker of particular interest, for which we often have closer to 23 people attend. People with long standing disease as well as people not-yet-diagnosed diagnosed attend. Age of attendees have been from 15 - 70ish. Some people are currently in a great deal of pain, while others are running marathons. Close friends and relatives are welcome to join & fully participate at the meeting, sometimes they join without the person with the disease. People have been extremely good listeners and openly share their experiences and information dealing with the same issue. Over 30 years ago, the first small group meeting (also held in Los Angeles) was comprised of people living with the disease, their loved ones and physicians. That tradition works well for our group. Refreshments are welcome, but there is no need to bring anything. There is no cost to attend. Several people in the group already donate and raise funds for the SAA, you are encouraged to join them, but donations are not solicited at meetings.

Past Meeting Topics

  • 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 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.
  • 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:

April 2014 | March 2014 | July 2013 | June 2013 | May 2013 | February 2013 | January 2013 | December 2012

Want to start a new support group?

Starting a spondylitis support group can be a fulfilling and rewarding challenge. The knowledgeable volunteers who lead SAA-Sponsored Spondylitis Educational Support Groups play a vital role by providing a forum for those with spondylitis to connect and offer support. Interested in taking on this role?

Learn More!

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Contact Us

Spondylitis Association of America

16360 Roscoe Blvd.  Ste. 100
Van Nuys, CA 91406

Email

info@spondylitis.org

Toll Free Hotline

(800) 777-8189 U.S. only
or (818) 892-1616

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