My Experience at the SPARTAN Conference

My Experience at the SPARTAN Conference

By Richard Howard, MBA

 


Richard Howard and our 2014 award recipient, Pamela Weiss, MD.

A few weeks ago I had the opportunity to attend the two-day long SPARTAN conference in Denver. Comprised of spondylitis clinicians and researchers, SPARTAN (the Spondyloarthritis Research and Treatment Network) meets each year to discuss new research and to hear abstract presentations from Fellows and SPARTAN members.

 
While at the conference, I heard first hand from numerous researchers how SAA’s funding is advancing spondylitis research. Just this past year, in fact, SAA awarded three $20,000 grants to early career researchers focusing on spondylitis - both to recognize their work, as well as to encourage and enable them to continue their research. The award - the SAA/Jane Bruckel Early Career Investigator Award in Axial Spondyloarthritis - started several years ago, and as of now has been awarded to seven promising early career researchers.  I’ve met them all and they are brilliant.

My favorite moment of the conference would in fact be a brief interaction in a quiet corridor with one of our past awardees. 
 

The incredible, greatly respected researcher in spondylitis was walking quickly out of the hall where she had just presented her latest genetic research on spondylitis. We exchanged greetings as we hurried onward and before we parted ways she said, “I’m very grateful for the SAA. You guys got me started in spondylitis all those years ago.” Our encouragement and nudge toward spondylitis had certainly paid off - big.



Drs. Michael Weisman and John Reveille at a past SPARTAN meeting.



 I also had lunch with a group of young researchers from around the country who were anxiously getting ready to present their work to a room of established researchers. One of them may one day be nominated to win our award. I learned that most of these gifted doctors and researchers hadn’t really decided what to focus on in their careers. I grabbed the opportunity to let them know why work in spondylitis is so critical for so many people. The reality is that spondylitis is woefully underfunded and under researched, and since it’s not well known, young researchers have to learn about the disease and its impact.

As people living with spondylitis, we have questions and need answers. The pace of progress is literally painfully slow for people with spondylitis. However, in my lifetime, I’ve seen ineffective and hazardous “treatments” routinely prescribed be disproven, seen things I know - in my gut - to be helpful, confirmed, and new treatments discovered. SPARTAN also came into existence in my lifetime, with SAA organizing its first meeting in 2002, and carrying the group under its fiscal umbrella for 11 years thereafter.

 
 

We are at a very exciting point in research. The costs to do genetic analysis - not just on human genetic codes but also on our microbiome system - is coming down. This is enabling researchers to gather and analyze greater amounts of data to better study questions like: why do so many people get spondylitis; why do some people’s disease progress so quickly and painfully; and most importantly, what can be done to prevent and interrupt the disease.

I’m grateful for the work that has already been done and hopeful for the future.

 

 

We Count Things That Are Important
Originally posted at Walk Your AS Off

We Count Things That Are Important

May 29, 2015

Did you count your steps today? Are you more mindful of your steps now that you have been counting them?

This is weird, but I count people in a room. It’s a habit I was taught. I started working with kids when I was fourteen. As a camp counselor, youth groups counselor, teacher and as a director of informal education and camps, when you’re loading the bus coming back from a beach trip, you better know that you have everyone. When you’re working with teens on a camping trip, you better not be missing two at any time. I’m also pretty good at counting large rooms quickly.

Last time I spoke in front of a room with a thousand people, I did some quick math.
Odds are that at around 80 people in the room are HLA-B27 positive. Probably eight of them have AS. Among the 960 others, two probably have AS. So, at least 10 people in the room had axial spondyloarthritis (axSpA). If the people in the room had an average of 150 friends, then the room was friends to 1,500 people with ax-SpA and loosely connected to three times that.

There are around 41 genes, in addition to HLA-B27, that are associated with spondylitis. We thought a cure for AS was around the corner when HLA-B27 was found to have such a high association with the people that have the disease. I don’t believe any rheumatic disease has such close association to a specific gene. That was an exciting time. Back when docs waited for irreversible damage to be visible on xrays, it could take nearly 10 years – or longer- for people to be diagnosed with AS.

When kids had pain, they were told it’s growing pains. As we now understand, some people with non-radiographic spondyloarthritis (nr-axSpA) have all the pain and never fuse. Those people would be misdiagnosed with a long host of diseases from Fibromyalgia to psychological disabilities; some of us had unnecessary surgeries. HLA-B27 hasn’t given us a cure (yet), but it can and has reduced the time it takes to be diagnosed.

The close association of HLA-B27 with AS often means the more HLA-B27 there is in a population, then the more people develop AS. If you could wipe HLA-B27 off the earth, would you? Should you? I understand it’s a tempting thought.

Clinicians and researchers suspect that people positive with HLA-B27 do better against viruses than those that are negative. That may include AIDS. I understand that this class of genes (HLA) are responsible for detecting foreign substances and triggering the immune system. Drug molecules, bacteria, viruses, tumor cells and immunity. It’s apparently used as the basis for organ transplant rejection. Are we here today, because an ancestor with a gene – that made us susceptible to spondylitis – survived an epidemic? The more we know about genes and diseases, the sooner we can get personalized medicine. We will stop asking doctors “What are the odds of…?” and start asking “What will happen to me?”

Not only do researchers come to SAA looking for participants to understand, treat and cure spondylitis, researchers also come to SAA looking for people that are HLA-B27 positive for other conditions.

If you want to advance research, please join SAA. Your information will be kept confidential, but we will let you know of research opportunities and of the research results at

www.spondylitis.org

 

To learn more about the benefits of becoming an SAA member, please visit 

http://store.spondylitis.org/productlist_sm.aspx?department=1

Spondylitis Awareness Matters – Instagram/Twitter Campaign

Spondylitis Awareness Matters – Instagram/Twitter Campaign
From WalkYourASOff

April 8, 2015

Spreading awareness for a disease helps in all sorts of ways. Ask the ‘ice bucket’ people. For Spondylitis, awareness improves lives. Everyone ‘walking their AS off’ already understands this and has their own story to share.

April is Spondylitis Awareness Month

Saturday, May 2, 2015 is World AS Day

Please join the Spondylitis awareness campaign this month 

and have a chance to win an ipad mini! 

 

In my position at SAA and as a support group leader, I’m exposed to a lot of reasons why awareness matters.

What happens when people are unaware?

1. People ‘self medicate’ with alcohol and drug abuse.
2. People break their neck with a roller coaster ride (or a ‘simple’ fall).
3. People have permanent vision damage including loss of eyesight.
4. People are considered whiners, lazy & antisocial.
5. People think it’s normal ‘growing pains’ when a child on the floor crying from hip pain.
                                    
6. People have spine or hip surgery, merely to have the pain return.
7. People (docs) mistakenly diagnose patients with mental illness instead of referring to a rheumatologist.
8. People (docs including chiropractors) are confused why their patients are not getting better.
9. People (radiologists) don’t notice ankylosing spondylitis on the x-ray and MRI.
10. People forget to donate to this pretty common, painful and often permanently disabling disease.
11. People are undiagnosed to the point that it’s too late for treatments to be effective in stopping permanent damage to the spine.
12. People don’t know why they are angry and short tempered.
13. People may never fully trust doctors again.
14. People lose out on having close, long term relationships with their parents, spouses and children.
15. People don’t know that their digestion, vision, small joint pain, back pain, fatigue and limited range of motion, osteoporosis, sciatic pain, heart and lung issues are all related.
16. People feel isolated, alone, depressed.                    
17. People don’t know what can be done to feel better.

Seronegative spondyloarthritides, more commonly called spondyloarthritis or simply spondylitis, refers to a group of auto inflammatory diseases that primarily affect the spine and other joints.

 

The CDC estimates at least 2.7 million adults in the USA have axial spondyloarthritis. That’s not rare. Men and women get this. Rheumatologists diagnose and treat this disease. There is a genetic component and so there is a tendency to occur in more than one family member.

 

There is no definitive blood test and diagnosis is not simple. Incredibly, people can be relieved to hear that they have this painful, incurable disease… because they have been living in pain without any medical answers for years and years.

 

Common factors used to diagnose spondylitis include:

• Onset usually under 45 years
• Pain persists for more than 3 months
• Back pain and stiffness worsen with immobility, and eases with exercise
• NSAIDS usually help

A lot of progress has been made in the 30 years the SAA has been around. There is a network of support. There are researchers improving lives and seeking a cure. There is reliable, evidence based information in a magazine, website, email newsletters, at seminars and just a phone call away.

There is advocacy work being done. Visit www.spondylitis.org for more information.