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AFeatures 
News for friends of the Arthritis Foundation, Great West Region
July 2013

 

Articles This Issue

School is Back in Session for those with Arthritis
The Arthritis Foundation’s public education forums provide attendees with unique lessons about the future of arthritis and more. Read how.

Why I Volunteer
Mary Norton cycles on behalf of all those she loves that are affected by arthritis. Read her story.

John Vernachio Named Vice President of Research
The Arthritis Foundation, National Office appoints biotechnology expert to helm research efforts.  Learn more.

Going the Distance
Kids with arthritis often have to travel great distances to get the care they need. Read one family's story.

Smoke Signals
Local humanitarians help their community, one rack of ribs at a time.  Read more.

Top of their Towns
2013 marks a banner year for Arthritis Walks in the Great West Region. Find out the Region's top teams.

The New KidsGetArthritisToo.org
A new, comprehensive website launches for families affected by juvenile arthritis. Discover its resources.

Foundation Facts

Get Connected

 


 

School is Back in Session for those with Arthritis

The Arthritis Foundation’s public education forums provide attendees with unique lessons about the future of arthritis and more.

seminarOne of the most vital services that the Arthritis Foundation provides to people with arthritis are education forums. These half-day or full-day forums are packed with educational presentations related to arthritis, resource tables from community partners, question and answer sessions and exercise demonstrations.

Especially when paired with the Arthritis Foundation’s Programs for Better Living, educational materials, website resources, interactive online tools or our community seminars, the education forums can provide successful outcomes to help people live with the daily challenges of having a chronic disease.

Through 15 education forums from Alaska to Colorado, over 49 presentations were made to hundreds of people thus far in 2013.

The topics at these education forums often include sessions on nutrition, disease overviews, coping skills, alternative and complementary therapies, medication reviews, exercise techniques, research updates, and disability rights.

“Participants at our education forums often gain clarity about their disease and can often be surprised by the basic facts related to arthritis or treatments. There’s often an ‘a-ha!’ moment to be had at an Arthritis Foundation education forum,” says Lisa Fall, Chief Mission Officer for the Arthritis Foundation, Great West Region.

quotesStuart Kassan, MD, FACP, is a rheumatologist and presenter at many local education forums. “The Arthritis Foundation patient education seminars are an excellent way for patients to get the latest information regarding the most effective treatment options for people living with the chronic pain of arthritis. This information helps empower people and enables them to make informed decisions about their health care,” he says.

Panelists and presenters, made up of rheumatologists, orthopedists, physical therapists, complementary medicine experts and mental health professionals, to name a few, often have valuable takeaways of their own. Many presenters learn a lot from the participants and their questions.

“The education forums give me the platform to answer questions in a group setting. This helps patients because many of them have similar questions. This helps de-bunk the myths and misnomers. Factual information is empowering and helps people feel more at ease with what they are facing,” comments William J. Peace, MD, a presenter at one of the education forums.

“Presenting at education forums with the Arthritis Foundation helps us reach more people and improve the lives of those living with arthritis. It’s a win-win-win for our practice, the Foundation, and, most importantly, the patients,” says Todd Miner, MD.

Everyone’s arthritis story is different, but the medical and expert presenters at the education forums can center their information to anyone’s individual needs.

The education forums attract people from all walks of life, with all forms of arthritis. Many participants bring their primary caregivers and friends or family members so they can all learn the latest ways to manage the disease and explore, and relieve, the impact on the whole family.

“Arthritis doesn’t just affect the person diagnosed with arthritis, it affects the whole family,” says Fall. “We often hear that the caregivers or family members walk away having learned just as much at an education forum as the person with arthritis.”

When participants attend patient education forums, they gain knowledge and support, meet others who share their challenges and discover new tools to add to their arthritis management arsenal.

Find out more:
Discover upcoming education forums in your area on our Events page.

Explore many of the topics presented at education forums through the Arthritis Foundation website informational sections.

The Arthritis Foundation offers a series of online videos related to arthritis care and management. Watch these videos to learn more.

 

 


 

"Why I Volunteer..."

Mary Norton

Mary Norton cycles on behalf of all those she loves that are affected by arthritis. 

Mary Norton has been a dedicated Arthritis Foundation volunteer and cyclist for nine years. Mary is a rider and team captain for Team Nana as part of the California Coast Classic Bicycle Tour. The California Coast Classic is the Arthritis Foundation’s eight-day cycling event that takes riders from San Francisco to Los Angeles to raise awareness and support for the Arthritis Foundation.

A lifestyle bicyclist, you can often find Mary pedaling around Oakland and Berkeley on her hybrid or road bikes. Mary stepped off of her bike for a few minutes to sit down with AFeatures to discuss her volunteerism and family connection to arthritis.


Mary NortonName: Mary Norton

Location: Oakland, California

What is your connection to arthritis?
There’s certainly a family connection!

My mother died from the effect of rheumatoid arthritis at age 82, which was three years ago. By that point, the joints in her hands were so destroyed that she no longer had any joint connections. She couldn’t garden and she had stopped driving because her hands didn’t have enough strength to hold the steering wheel.

My mother probably had rheumatoid arthritis long before her actual diagnosis. She was always pushing forward and knew that if she stayed active and kept moving that it would prevent her arthritis from becoming worse.

My daughter Sarah was diagnosed with juvenile rheumatoid arthritis when she was 12 years old. She is 25 years old now. Sarah had major flares of her disease, which we were fortunate to be able to get under control with medications each time. Because of how prevalent the field of medicine has been in Sarah’s life, she’s now studying integrative and alternative medicine at the National College of Natural Medicine in Portland, Oregon.

My sister also has rheumatoid arthritis, and was diagnosed on the exact day I began riding the California Coast Classic two years ago.

 

How did you first become connected to the Arthritis Foundation?
I was in a bike shop in Berkeley, California and saw a pile of brochures for the Arthritis Foundation’s cycling event, the California Coast Classic Bicycle Tour.

I’m a lifestyle bicyclist. I commute to work and travel everywhere on my bike. Because of that, I knew that this was an event that I could do and I wanted to support the cause because of my family connections to arthritis.

I called the Arthritis Foundation and they connected me to a coach to help me train for the ride. That was the beginning of my involvement.

 

What were some of the ways that the Arthritis Foundation has supported you?
The biggest one is Arthritis Today magazine. I find this to be an incredible resource for people with arthritis. I read every issue from cover to cover. I work at a senior center and I always bring in my copy to share with everyone.

The local office of the Arthritis Foundation here in San Francisco is a font of information and support. They’ve helped me realize things like the importance to keep moving.

 

How have you been involved with the Arthritis Foundation as a volunteer over the years?
I rode in my first California Coast Classic in 2005. This year, 2013, will mark my ninth ride.

I ran the Marin County Jingle Bell Run/Walk in 2012 for the first time. I made first in my age division, which I call the “old lady prize”.

We now hold an Arthritis Foundation Exercise Program in the senior center where I work, and are planning to offer the Arthritis Foundation Tai Chi program soon as well.

I am always promoting the Arthritis Foundation and its work. My goal is to constantly get the word out about arthritis, especially about juvenile arthritis. I show the post-California Coast Classic ride video at my senior center. It really inspires the people there to see the great lengths people go to so that they can support the Arthritis Foundation. I also show the slideshows for our local juvenile arthritis camps. It always blows people away to learn that kids get arthritis, too.

 

What makes a good volunteer?
A good volunteer stems from when people have a connection to arthritis, whether it is inherited or learned.

Volunteering makes you feel like there’s something you can do for those with arthritis. The term ‘take control’ is in the motto of the Arthritis Foundation and volunteering allows you to do just that.


What are some of your favorite Arthritis Foundation volunteer experiences?
MaryThere are countless moments that I hold on to and consider inspiring as a volunteer.

Seeing all those California Coast Classic cyclists that are riding with arthritis, and seeing them persevere… that’s very powerful. When my daughter Sarah (pictured right with Mary) rode the California Coast Classic, her wrists would hurt so badly by the end of the day. There’s another member of the ride that just keeps on moving the whole time because she knows that if she rests too long inflammation will set in and she may not be able to move again that day.

When we hold our kick-off dinner for the ride, they ask all those riders with arthritis to stand up. It’s very moving to me.

 

Was there ever another Arthritis Foundation volunteer that impacted your life?
Jeff Bass is one of the riders on the California Coast Classic. He has imbued me with the concept of being an ambassador for the Arthritis Foundation at all times. Whether you are at work, at home or at play, there are always opportunities to share the story of people with arthritis and the Arthritis Foundation. Jeff has taught me that.

Jerry Kruse is another volunteer that has significantly impacted my life. Jerry is one of the coaches for the California Coast Classic. He leads training rides. On these training rides he ensures that everybody feels welcome and part of the group. He makes sure that everyone has a good day, and offers meaningful, practical advice and support. He is a super coach, and always keeps us going on long rides. He builds everybody up so that each and every person is ready for the California Coast Classic. Jerry is everyone’s inspiration.

 

Find out more:

The Arthritis Foundation, Great West Region offers two premiere cycling events.

The California Coast Classic is an eight-day ride that takes place September 28-October 5, 2013 and travels down the coast of California, from San Francisco to Los Angeles. More information can be found at www.AFCABikeClassic.org.

The Amgen People’s Coast Classic takes place September 8-13, 2013 and travels down the Oregon coast from Astoria to Brookings. Two, four and six day rides are available. For more information, go to www.thepeoplescoastclassic.org.

 

 

 

 


 

John Vernachio Named Vice President of Research 

The Arthritis Foundation, National Office appoints biotechnology expert to helm research efforts.

VernachioThe Arthritis Foundation announces the appointment of John Vernachio, Ph.D. as vice president of research effective April 15, 2013. In his new role he will provide leadership and direction to further the Arthritis Foundation research program and the organization’s commitment to finding a cure and better, safer treatments for the nation’s leading cause of disability. Vernachio will succeed Dr. John Hardin, who will assume a new role within the organization developing and implementing flagship initiatives in osteoarthritis.

“John Vernachio is a world-class scientist and director in biotechnology with a proven track record,” says Arthritis Foundation Chief Mission Officer, Jennifer Griffiths, Ph.D. “I am confident that under his leadership the Arthritis Foundation will continue its legacy in driving targeted research initiatives that will push us toward a cure.”

Vernachio brings to the Arthritis Foundation extensive research leadership and expertise, serving as a researcher and technical director in the biotechnology sector for more than 20 years. Most recently, he served as vice president of biology for Inhibitex, Inc. Earlier, he held supervisory and leadership roles in several biotechnology companies including Baxter Healthcare and Valentis, Inc. In addition, he is an author on over 20 peer-reviewed scientific articles, numerous scientific presentations and is a co-inventor on 10 patent applications.

A graduate of the University of Vermont, Vernachio earned a Bachelor of Science degree in Animal Science in 1984. He received a doctorate in biochemistry with a concentration in immunology and molecular biology in 1989 from Johns Hopkins University and completed his post-doctoral training in the Department of Immunology at The Research Institute of Scripps Clinic in San Diego in 1991.

Find out more:
Visit the Arthritis Foundation’s research page to find out the latest arthritis research initiatives.

 


 

Going the Distance

Kids with arthritis often have to travel great distances to get the care they need.

Audra Olson knows the drive like the back of her hand. Every month, sometimes more often, Audra faces a three hour drive through rain, snow, traffic and other obstacles to get her daughter the medical care that she needs.

LibbyAudra’s daughter Libby Rinke (pictured, left) was diagnosed with aggressive polyarticular juvenile rheumatoid arthritis at age 10. Libby’s hands, ankles, feet, hips and knees are affected by inflammation and pain because of the disease. Now 11, Libby is on her third biologic medication, the first two medications having failed, and starting to see positive results.

Libby requires the medical attention that only specialists can provide. In order to get it, the Olson/Rinke family realized that they would need to travel outside of their home town of Wenatchee, Washington, located in the central part of the state.

“We only have one adult rheumatologist in our area that sees kids,” Audra says. “We needed to go to Seattle Children’s Hospital to get Libby the best, and necessary, care.”

The 300 mile round-trip journey leads them over two mountain passes, takes at least three hours to complete one way and costs over $150 in gasoline and food costs.

infusionAudra estimates that they have traveled to Seattle Children’s Hospital at least 27 times since Libby’s diagnosis. Not only does Libby need to see her pediatric rheumatologist at Seattle Children’s Hospital every three months, but she also has monthly physical and occupational therapy appointments there, as well as medication infusions (pictured at right) and appointments with other related specialists such as gastroenterology. On average, Libby has six hours of appointments at each visit.

“We are at Seattle Children’s a lot for regular appointments, and that doesn’t even include emergency appointments if Libby is flaring or if her meds aren’t working and we need to change her medications,” Audra says.

She continues, “I’m lucky to have the vacation and sick time to be able to take off of work for each of these appointments, but it still uses up most of my time off from work to go back and forth to Seattle.”

The Arthritis Foundation is seeking ways to alleviate this burden of travel on families by increasing the number of pediatric rheumatologists. Currently, there are less than 250 board certified, practicing pediatric rheumatologists in the United States and about 90 percent of those are clustered in and around large cities. Pediatric rheumatology has one of the smallest numbers of doctors of any pediatric subspecialty.

Of those children with juvenile arthritis, only one-fourth see a pediatric rheumatologist due to their scarcity. The other 75 percent of juvenile arthritis patients see either pediatricians (who tend not to be trained in how to adequately care for juvenile arthritis) or adult rheumatologists, who aren't trained to deal with pediatric issues, whether it’s the stunted bone growth that can result from arthritis and its treatment, or the unwillingness of an adolescent to take his or her medicine. Furthermore, the diseases that are common in children can be very rare in adults, so a rheumatologist may have rarely, if ever, had occasion to diagnose and/or treat those related diseases and co-morbidities. There are currently eleven states that do not have a single practicing pediatric rheumatologist and seven states with only one pediatric rheumatologist.

The Pediatric Subspecialty Loan Repayment Program was authorized by Section 5203 of the Affordable Care Act (ACA) in March 2010. The program, which would be administered by the Health Resources and Services Administration, would incentivize training and practice in pediatric medical subspecialties, like pediatric rheumatology, in underserved areas across the United States. The program would offer up to $35,000 in loan forgiveness for each year of service for a maximum of three years. The program was authorized for $30 million for fiscal year 2010 through fiscal year 2014, but has yet to be appropriated any funding.

In the fiscal year 2013 budget, President Obama requested $5 million dollars to fund the Pediatric Subspecialty Loan Repayment Program. Then, in July, 2013, the Senate Appropriations Committee approved a spending bill for fiscal year 2014 that proposed $5 million for the Pediatric Subspecialty Loan Repayment Program.

To receive funding in fiscal year 2014, the House of Representatives must also include funding in their proposed fiscal year 2014 spending bill, which the House is currently drafting. To help alleviate the current shortage of pediatric rheumatologists in the United States, the Arthritis Foundation is urging Congress to appropriate $5 million to fund the Pediatric Subspecialty Loan Repayment Program in fiscal year 2014.

The Pediatric Subspecialty Loan Repayment Program is at a critical juncture. Arthritis advocates can make a difference by reaching out to their Representative and requesting their support. When you do, you’ll be helping children with arthritis, like Libby, get the specialty care they need closer to home.

Find out more:
Find out the latest updates on this issue, or send a pre-drafted message to your Representative requesting their support for the Pediatric Subspecialty Loan Repayment Program.

 

 


 

Smoke Signals

Local humanitarians help their community, one rack of ribs at a time.  

BBQThere’s smoke rising in the north, and it smells good.

It’s July 6, 2013 in North Pole, Alaska. Hundreds of runners, walkers, strollers and dogs have gathered for the 2013 Arthritis Foundation Jingle in July, a 5K run and walk to raise support and awareness for arthritis in North Pole, Alaska. Participants don festive attire, including elf ears, Santa suits and jingle bells on their shoelaces.

The race gun goes off, and the runners and walkers start the race. 3.1 miles later, they begin crossing the finish line. The top fundraising teams file into the VIP tent, where a special treat awaits them – a full service trailer serving up classic Texas barbecue. Yup, Texas barbecue in North Pole, Alaska!

Joyce and Jewel’s BBQ serves barbecue, free of charge, at charity events.

They charge no fees for providing food to non-profit organization community events. They donate all of the costs of supplies, food, travel and their time to the non-profit organization they are serving. Brisket, ribs, chicken, sausage, beans and more are all on the menu when they serve hundreds of people at community events each year.

BBQHusband and wife team Larry and Tina James (pictured left) started Joyce and Jewel’s BBQ in 2010 as a way to honor their mothers, Joyce James and Jewel Vivens, who had both passed away. Their goal was to create a legacy for their loved ones and “send smoke to heaven for fallen angels”.

Their motivation was further strengthened when their daughter Avonna, who was born with a rare liver disease, passed away in March of 2011. Tina and Larry expanded their mobile barbecue trailer and began offering their donation of time, spirit and food at many more community events.

Despite their other full-time life commitments (Larry is Superintendent, 354th Contracting Squadron at Eielson Air Force Base near Fairbanks, Alaska), Tina and Larry’s first love is the work of Joyce and Jewel’s BBQ.

Larry pronounces, “For me, if I’m not out serving people and being a blessing to other people than I’m not living my life right. We’re always looking for opportunities to give back.”

One of those opportunities came when Larry found out about the Arthritis Foundation’s Jingle in July.

“I saw a banner on a fence for the Jingle in July, and called the Arthritis Foundation to offer our help,” says Larry. “Jingle in July was an awesome experience. It warmed our hearts. We sponsored the VIP tent, which was an area for those people that raised the most money at the event.”

Larry continues, “It was great to be able to share our story at Jingle in July. When people go through tough times in life, like when they have arthritis, it can be good to hear a story like ours of how you can change tough times into something to help others.”

“We want people to know that they can make it through, too.”

Larry’s Dad and Aunt are both affected by arthritis, making his volunteerism at the Jingle in July a bit more personal.

And Larry’s favorite menu item of Joyce and Jewel’s BBQ? “It’s gotta be ‘Avonna’s Awesome Beans’. My daughter helped develop the recipe and it always gets rave reviews.”

Find out more:
To learn more about Joyce and Jewel’s BBQ and see photos of their tastiest barbecue, visit their website at www.joyceandjewelsbbq.com.

 

  


 

Top of their Towns 

2013 marks a banner year for Arthritis Walks in the Great West Region. 

The Great West Region 2013 Arthritis Walk season is almost at a close, with one event remaining. Combined, nine Arthritis Walk events had over 4,427 participants and raised over $460,000 through 5,454 donors.

We would like to take this opportunity to thank all those who walked, donated, attended and spread the word about their local Arthritis Walks.

Top Arthritis Walk Teams in the Arthritis Foundation, Great West Region:
1. DAC Rheumatology (Denver) - $13,885
AW2. Team BAAA (San Francisco) - $12,022
3. SOAR Rheumatology (San Francisco) - $11,871
4. Jessters (San Francisco) - $10,810
5. 5GIRLS1D (Bellevue) - $9,553
6. Andy & Katie’s Team (Denver) - $7,916
7. Zack Attack (Tri-Valley) - $7,887
8. Kids and Teens Get Arthritis Too! (Tacoma) - $7,562
9. CrazyBonez (Tri-Valley) - $4,819
10. Emma Heaton (Salt Lake City) - $4,780
11. The J Team (San Francisco) - $4,691
12. Team Emanuel (San Francisco) - $4,505
13. Team Ellie (Denver) - $4,120
14. Team Esella (Tri-Valley) - $4,100
15. Joint Effort (Denver) - $4,005
AW16. Valor Christian (Denver) - $3,815
17. Movers and Shakers (San Francisco) - $3,548
18. Crescendo Bioscience (San Francisco) - $3,301
19. Team Scrappi (San Francisco) - $3,244
20. R.O.A.R. (Really Outrageous Arthritis Racers) (San Francisco) - $3,049
21. Shelby’s Stars (Vancouver) - $3,048
22. Grand for the Cure (Denver) - $2,926
23. Team Emma (Eugene/Springfield) - $2,875
24. Dom’s Amazing Race (Denver) - $2,845
25. Ashlyn’s Allstars (Salt Lake City) - $2,836
26. Team Jazz (Tri-Valley) - $2,710
27. Anna’s Angels (Denver) - $2,581
28. Team Ashley (Tri-Valley) - $2,565
29. Viva Aviva (Tri-Valley) - $2,532
30. Classy Claire’s Walkers (Denver) - $2,516
AW31. Reidyns Rebellious Renegades (Vancouver) - $2,514
32. Walk This Way (Tri-Valley) - $2,427
33. Lively Lupus Lapsters (San Francisco) - $2,402
34. Team Libby (Bellevue) - $2,382
35. Rollin’ Homies (Bellevue) - $2,357
36. Oma’s Flare Fighters (Denver) - $2,332
37. Sams peeps-Walmart 2925 (San Francisco) - $2,325
38. Hand Surgery Associate’s Team (Denver) - $2,306
39. Keep up the pace (Salt Lake City) - $2,293
40. Laurie Jones Neighbors (San Francisco) - $2,231
41. Brynne’s Brigade (Denver) - $2,230
42. JOINT EFFORT (Tri-Valley) - $2,212
43. Peachey’s Pack (Denver) - $2,007
44. Team Ankylosaurus (San Francisco) - $1,966
AW45. These Boots Were Made for Walking (Tri-Valley) - $1,962
46. Arthritis Fighters (Eugene) - $1,928
47. KATELYN’S CREW (Tri-Valley) - $1,837
48. ROAD Clinic @ part of FMG (Tacoma) - $1,771
49. Moving Together (Denver) - $1,700
Team Webster (Tri-Valley) - $1,700
50. Team Slocum (Vancouver) - $1,630
51. Kassan’s Krew (Denver) - $1,595
52. Team Bankles (Denver) - $1,585
53. Team Nelson (Denver) - $1,580
54. The Peter J. Seippel Foundation & Friends (San Francisco) - $1,372
55. Team Believe (Vancouver) - $1,350
56. Bethesda Sole Mates (Colorado Springs) - $1,300


Find out more:
Ready for more community involvement? Jingle Bell Run/Walks are coming up in November and December across the Region. Find your local event.

The Southern Oregon Arthritis Walk will take place on Saturday, October 5, 2013 in Medford, Oregon.

 

 


 

The New KidsGetArthritisToo.org 

A new, comprehensive website launches for families affected by juvenile arthritis. 

KGAT

 

Introducing a new website from the experts you trust!

www.KidsGetArthritisToo.org

Everything you need to live better with juvenile arthritis, now in one place.

• Find information, tips and other great resources
• Ways to connect and share with other families
• Learn about medications and treatment options
• Read the latest about research breakthroughs
• Parent and kids stories, local events and more

Check it out today!

  

 

 

 

 

 

 


 

Facts infographic

 

 

 

 

 

 

 

 

 

 

 

 

 


 

Get Connected

Find your local Arthritis Foundation office to get connected to programs and events.

Find out about all of our volunteer opportunities on our Volunteer Resource Page or fill out a volunteer application.

Feedback or ideas for AFeatures future stories? E-mail wbalmer@arthritis.org

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