Category Archives: Juvenile Arthritis

Posts related to juvenile arthritis, research and impact

Trip Presentations Made – Northampton Community College and Buck Ridge Ski Club

Had the opportunity to make a presentation on the trip to Alaska to both the Northampton Community College and to the Buck Ridge Ski Club this week. I have attached a “movie” version of the presentation for anyone interested.

If you are connected with an organization and/or group that might be interested in seeing the presentation, I’d be happy to do it for you.  No cost, just furthering the cause.

Final throws of the fundraising through the Jingle Bell Run in Malvern, PA in a few weeks.  If you have a notion to contribute, I will probably keep the fundraising site active until the end of the year, the its to the mothballs for it…

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Camp Victory 2012

2011 Camp Victory Particiapants

I had the opportunity to stop by the 2012 JA Camp Victory today and make a brief presentation on the trip to Alaska.  Some readers may recall that the Journey to Alaska formally “kicked-off” at the 2011 Camp Victory with the signing of the panniers.  The presentation I made on the trip can be downloaded via this link:    Wrp-up Presentation

I am working on getting a smaller version posted in a MOV format… Stay tuned.

Was a scorcher of a day, 97 degrees out when I hit Bloomsburg today.  However, was worth it to see all the kids an folks from the Camp and who had participated last year.  I was a bit overwhelmed, not one used to a lot of gratitude for the things that I do – truly heart felt thanks from the kids and made all the trials and tribulations worth while.  I think there must have been about 150 folks in the room and all were appreciative.  Great feeling.

Next “appearance” is at the Hopwood School on Friday, then things are pretty well wrapped up.

Again, will have a summary after the Hopwood appearance this week – hopefully this week-end.

Reprint from the Alaska Journal (from Pottstown Mercury)

Here is the text from a recent article that was in the Pottstown Mercury and the Alaska Journal:

Pa. man motorcycling to Alaska for child illness

EILEEN FAUST,THE (POTTSTOWN) MERCURY

SCHWENKSVILLE, Pa. (AP) — Though the trip won’t be easy, Ted Danforth hopes his 12,000-mile, solo motorcycle ride to Alaska will make life a little easier for the 300,000 children in the U.S. diagnosed with juvenile arthritis.

Danforth, who is no stranger to adventure, is hoping to raise $25,000 for arthritis research while getting the chance to travel the country and see the state of Alaska for the first time. While his family has been affected by arthritis (“I’ve been sworn to secrecy as to who it is,” Danforth said in a recent interview), he said he is lucky no one he is related to has been afflicted with juvenile arthritis, commonly referred to as JA.

Juvenile arthritis is a blanket term referring to different chronic autoimmune and inflammatory illnesses afflicting children age 16 or younger, according to the Arthritis Foundation, which is handling the donations for Danforth’s ride (www.alaskaride.kintera.org).

Children with JA experience pain and inflammation in their joints, intestinal tract, skin, and even their eyes could be affected, according to the Arthritis Foundation. There is currently no known cause for most types of juvenile arthritis. Some children may experience symptoms for a few years or the rest of their life.

“I can’t help think about what it would be like to be a parent and see your child go through this — each day bringing new challenges to all of those activities that we take for granted,” said Danforth, a father of 25 years, in a press release.

If there is one thing Danforth doesn’t do is take life for granted. The former owner of Hidden River Outfitters operates HRO Adventures Inc. and previously kayaked the waters around Maine. He has also ridden on a motorcycle through Patagonia, but this upcoming ride, which will start on June 10, won’t be a “rich man’s trip,” like that one, said Danforth.

He’s expecting the solo ride to take him 21 days or more and he plans to cover between 800 and 1,000 miles a day for the first few days on his BMW dual-sport 1200 cc motorcycle.

“The first six or seven days, I’ll just be trying to get there” (to Alaska), he said. If he’s up to it, he’ll even ride all the way back. He plans to camp for most of the trip but may take advantage of several offers he’s received from other motorcycle riders, outdoorsmen and those who support his cause of raising money for arthritis research.

The most interesting accommodations offer he has received so far has been from a brothel museum, which was active in the Gold Rush days.

But he’ll be camping “about half the time. The disadvantage to camping is you have to pack and unpack,” which is time consuming and can be unpleasant if the weather turns ugly.

The problems Danforth expects to face on his trip will likely present themselves along desolate stretches of highway in the northernmost state as he rides 500 miles on a dirt road to Prudhoe Bay, his final destination. He’s done “everything I could do” to plan for contingencies such as mechanical problems with his bike and bad weather, even practicing changing the tires on his motorcycle.

The tires will only last 6,000 to 8,000 miles, so Danforth knows he will have to change them at least once on his trip, which is why he made sure to ship an extra set north in preparation. “The roads are so rough it’s not unusual to get a flat” in the north, he said.

“It’s not fun if it falls over,” Danforth said of dealing with the 650-pound motorcycle, especially since he may not see anyone for days on his trip.

“Though if there’s a problem, it’s not going to be the motorcycle, it’s going to be the rider,” he said jokingly.

Or a possible lack of gas. Once he reaches Alaska, it could be more than 200 miles between gas stations. Luckily he accounted for that since his bike, when full, can travel 350 miles.

But his biggest concern isn’t anything to do with his own abilities or the travel. “My biggest concern is kind of silly, but my biggest concern is Grizzly bears. I do not like bears,” he said.

Confidence and spirit boosts should be plenty on his journey, despite the obstacles, as he carries the signatures of arthritis stricken children on his bike. Danforth recently visited Camp Victory, a camp for children with chronic health problems in Millville, Pa., which offers a special camp for kids suffering from Juvenile Arthritis. Around 125 children signed his bike as a symbol of those Danforth aims to help with his fundraising ride, and those signatures will remind him that despite the troubles he may find himself in on the road, “they will be small compared to those faced every day by the 50 million adults and 300,000 kids affected by arthritis.”

Read more: http://www.alaskajournal.com/Alaska-Journal-of-Commerce/AJOC-April-29-2012/Pa-man-motorcycling-to-Alaska-for-child-illness/#ixzz1uyzWmLpH

3 Weeks to go!

After almost a year of planning, I am about 3 weeks from departure on this amazing adventure.  Things are getting incredibly busy with all of the last-minute details, trying to organize the professional and personal aspects of my life for a 30 day absence and responding to the inquiries that are now becoming a daily occurrence.

I have decided that I have done enough planning – probably enough for a trip twice as long and more complex.  Now it is time to let it flow, respond to the weather and opportunities and just enjoy the ride.  I kind of compare it to kayaking a big boat in the heavy surf and reaching a point where the wave has taken control;  you are simply riding along, relaxing and keeping the bow pointed in the right direction – enjoy the ride.  The more you try to control, the less you have…

Posts may be short and succinct from here on – limited time and have probably said it all – ad nauseam…  Still looking for about $150 to break $4000.  Have a fellow fund-raiser, Roger Hyde who has joined the Kintera  site to help out.  Roger, if you are out there, Thanks!  Drop me an e-mail.

Thanks to all who have contributed, supported and offered wishes for success!  Still hoping for a wave of funding before leaving, but we are on the other side and focused on the trip from here on.

At Hermy’s on Saturday, then off to AK in about 2 weeks!

Running at the North Pole in July? (North Pole, AK)

I just got the word that there will be a Jingle Bell Run for Arthritis in North Pole Alaska, July 7, 2012 and have been invited to the event. North Pole Alaska? Yup – and a Jingle Bell Run in July – only in Alaska. This event, probably one of the biggest fund-raisers for the Arthritis Foundation in Alaska, draws over 600 participants and has an aggressive goal of raising $42,000 for the cause.

Where the heck is North Pole, AK you ask? And, why hold a “Jingle Bell” run in July? Well, the map to the right shows the location and think about it… would you run in a 5K in December when the average temp is about -10 degrees F and could be -40 with wind chill!

The Schedule Shifts

My original schedule had me home on the patio, feet propped up and cold beer in hand about the time the runners will be finishing up their 5K run. Would tacking another week and a couple of thousand miles cross the line for me, my family, business and general sanity? Well, my wife said to go for it, the benefits for juvenile arthritis fundraising/awareness seemed pretty real, and it also would give me an extra few days in the schedule to take some brakes, explore and bring the whole frantic pace of the trip down a notch. Sooooooo, now the schedule has been modified to allow for a 5K run on July 7, then head home hell-bent for election.

Within the next few days, I should have the revised schedule up for those who are interested. Based on the blog statistics, it appears that many are checking the schedule, so I’ll modify it as soon as I work things out.

Looking for a Jingle Bell Run Sponsor

As I am now doing a 5k in addition to the 14,000 miles of riding, I am looking for someone to cough up the entry fee for the North Pole Jingle Bell Run. The minimum fee is $20, but I would love to have the Ride to Alaska listed as a “Sponsor” which takes $250. If there is anyone out there willing or able, please drop me an at tsdanforth at yahoo dot com to let me know.

If anyone has an interest in contributing or sponsoring the North Pole Jingle Bell Run, feel free to contact Laura Goss of the Arthritis Foundation, Alaska. I hesitate to put direct e-mail links due to the spammers out there, so go to the website to get the contact information.

You are what you eat… how diet can impact symptoms

Several weeks ago I had the opportunity to visit the Quarry Hill Farm in Harleysville, PA with the intent of picking up a gift certificate for a healthy food conscious friend.  After spending the morning with the owners Scott Clemens and Sloan Six, I was intrigued by the touted link between disease recovery and diet.  Sloan’s story on cancer recovery and the impact of diet was pretty amazing and I wondered what the relationship might be between diet and juvenile (or any type) arthritis.  I did a little digging and came up with some interesting information applicable to not only copping with arthritis, but the impact diet can have on health, no matter what your situation.

The Quarry Hill Farm Story  (from the Quarry Hill website)

After more than three years of hard work and tremendous investments of time, science and love, Sloane Six and J. Scott Clemens proudly opened their Quarry Hill Farm, LLC. on-site in Harleysville, PA.

Far from the typical farmers’ market, most of the products are harvested from the hundred-acre farm, 100% organic, and produced with a family devotion to upholding the integrity of the Pennsylvania Farmland Preservation Program. The remainder of the products sold in the market are locally produced artisan foods, keeping true to Quarry Hill Farm’s focus on sustainability, environmental responsibility and support of the local community – while providing a one-stop shop for local customers.

“We ‘rescued’ these hundred acres from housing developers in 2007, and take great pride in our home being part of Pennsylvania’s Farmland Preservation Program,” said co-owner, Sloane Six. “To us, we are responsible for some of our community’s heritage.

Six, a breast cancer survivor, especially sees the value in a diet of organically grown and pasture-fed products.  “I’m not saying this diet could have prevented my cancer – maybe… maybe not. But I do believe there is a direct link to the food we eat and our health. After my diagnosis three years ago, I resolved to eat healthier, and it has made a tremendous difference in that I have more energy and can maintain a healthy weight much more easily. From the taste, to how in makes me feel physically and spiritually, I will never go back to non-organic produce or protein that is not grass fed.”

Before leaving the farm during my visit, Sloan and Scott gave me a bunch of literature on the benefits of eating well and an organically based diet.  Most of this information can be found on the Quarry Hill web site: http://www.quarryhillfarm.net

There are also a number of links from the Quarry Hill web site related to organic farming and healthy eating:

Eat Wild – Your source for safe, healthy, natural and nutritious grass-fed beef, lamb, goats, bison, poultry, pork, dairy…and other wild edibles.

Grass Fed Cooking – The official website for buying books and products directly form Shannon Hayes, your go-to gal for preparing grassfed and pastured meats.

Honey – Honey is honey, it’s just that simple. A bottle of pure honey contains the natural sweet substance produced by honey bees from the nectar of plants or secretions of living parts of plants. Nothing else.

Organic Eating – OrganicEating.com is a premium online location to learn about organic food and other organic-related products.

Go to Quarry Hill’s web site for more links to health eating.

Arthritis and Diet

My visit to Quarry Hill Farm rekindled an interest in the relationship between diet and disease recovery, and I spent a fair amount of time reading, searching the web and generally trying to distill the masses of information available.  It seems that the further I dug, the more confusing the issues became.  Between the diets, nutritionists, doctors, vitamin peddlers, Jenny Craig type weight loss programs, and commercial entities marketing their own products/programs; it was impossible to figure out the best approach for those dealing with arthritis in its many forms.  There is not doubt that no matter your position on diet, one can find numerous publications, journal articles, research and “experts” to support it.

It certainly appears that many people much smarter than me have tried to summarize the information available from all of the above sources.  To me, it seems that common sense should dictate.  There is clearly a link between diet and arthritis symptoms, as there is between almost any ailment and a healthy lifestyle.  Those with a sedentary lifestyle, excessive weight, with diets high in fat, cholesterol, sugar and salt appear to have more pronounced symptoms.   The converse is true as well

Without a doubt, all persons with arthritis, young and old, can benefit from eating a healthy well balanced diet according to the Arthritis Foundation – sounds like common sense and  is not difficult to accept.  Some other suggestions include:

  • Eat plenty of fruits, vegetables and whole grained products
  • Get recommended daily dosage of vitamins and minerals through diet and supplements
  • Avoid sugar, salt and fat (especially saturated fat found in animal products)
  • Maintain a healthy weight  – most of us know what that is.

Research has also shown several connections between food, nutritional supplements (such as vitamins, minerals and omega-3 fatty acids) and certain forms of arthritis or related conditions, such as gout, osteoarthritis, rheumatoid arthritis, reactive arthritis and osteoporosis.  Those with rheumatoid arthritis seem to show pronounced improvement in joint pain after taking fish oil or eating fish rich in omega-3 fatty acids (salmon, mackerel, and herring).

Since the Ride to Alaska and this blog are focused on Juvenile Arthritis, I would be remiss without acknowledging the challenges that parents must face in getting/keeping the kids enthused about eating more vegetables and fish.  As the father of a 4-yr old, I can attest to the constant battles surrounding the “eat your vegetables” scenario at the dinner table each night.

Above all, most literature that I muddled through advises that your doctor is the best source of advice on what you should (and should not) eat to ease the symptoms of arthritis.  Experimentation and fasting is risky and can exacerbate the symptoms.  Eat healthy, exercise and listen to your body – best I can offer…

I’ll focus on getting the bike to Alaska and back, let the experts deal with diet, but I hope this my help a little.

Camp JRA Video

2011 Camp Victory Participants

Here is a link to a great video from the kids at Camp Victory in 2010.  This is the camp that I visited in 2011 to meet the kids and have them sign the bike.  Gives an idea of their perspective on the Camp and Juvenile Arthritis challenges.

 

Check out the video here: What did you learn at Camp JRA this year(2010)?