Thursday, November 7, 2013

Our Blog Has Moved!

It is just a little over a year since the passing of our founder and dear friend, Jennifer Jaff, who will always remain with us in spirit. To commemorate her extraordinary contributions on behalf of those with chronic illness through advocacy, education and public policy, we have changed the name of our organization to The Jennifer Jaff Center.

We are very pleased to announce that our new website,, is now online! You will find all of the detailed information you've come to expect from us as well as some updated features to make our site more user friendly. The format allows us to easily edit and update information and our blog is now incorporated directly into our website.

Our blog can be found by clicking here.

Thank you!

Wednesday, August 14, 2013

Reminder: Get Your Guts In Gear August Rides!!

Looking for an unforgettable event that supports a great cause?  Join Get Your Guts in Gear for the 2013 Rides for Crohn’s and Colitis.
Get Your Guts in Gear, Inc. (GYGIG) was founded in 2003 to promote empowerment and awareness, and to raise funds for Crohn’s disease, ulcerative colitis, and ostomy advocacy. GYGIG brings together patients, family, friends, medical professionals, and cycling enthusiasts for an unforgettable and empowering experience. More than just bicycle rides, our events are the foundation upon which GYGIG has built an inspired and empowered community that carries our mission forward 365 days of the year.  Whether you’re an avid cyclist looking for a great ride, a novice rider looking for a challenge, or you’re interested in spending the weekend as part of our support crew, we invite you to become part of this inspiring community.
Please visit to receive additional information on upcoming events or find us onFacebook to get to know us.
Two Rides, Two Life-Changing Events!
New York’s Hudson River Valley:  June 7-9, 2013
The Midwest / Wisconsin:  August 23-25, 2013
Signature 2-Day Ride:
140 miles with an option for back-to-back century rides
Join us on Friday evening and ride with us on Saturday and Sunday.  Ride 140 miles, 170 miles, or add a century loop on both days for 200 fully supported miles.
NEW: 1-Day Cycling Option:
62.5 miles with an option for a century ride
Join us on Saturday afternoon and ride with us on Sunday. You can choose 62.5 or 100 fully supported miles.
In order to participate in our century option on either day, you must average more than 15mph over varied terrain.
Don’t want to ride?  Join our volunteer support crew from Friday evening through Sunday and become an integral part of this supportive community while providing the backbone of the event.
Each of GYGIG’s fully supported Rides provides two overnight camps with indoor accommodations where participants stop to relax, build lifelong friendships, and recharge with catered meals and hot showers.  GYGIG provides route support, including fully-stocked rest stops, sweep vehicles, and baggage transport.
Get Your Guts in Gear’s riders and enthusiastic volunteer crew participate – and keep coming back – because they find physical strength and emotional resolve they never knew they had, and are awarded with an accomplishment they can share with their new friends long after the Ride is over.  These cycling events offer the IBD and ostomy communities a positive, life-altering experience in their journey.  Participants also draw support from fellow riders, many of whom are touched in some way by inflammatory bowel disease or who have had ostomy surgery.
For the full 2- Day Ride, rider registration is $85, with a fundraising minimum of $1,250 per event.
For the 1-Day cycling option, rider registration is $65, with a fundraising minimum of $650 per event.
For crew members, registration is $85, and fundraising is optional, but supported and encouraged.
Fundraising supports Get Your Guts in Gear, Inc. as well as the Crohn’s & Colitis Foundation of America, the United Ostomy Associations of America, and Advocacy for Patients with Chronic Illness, Inc.— organizations committed to supporting patients, conducting research for inflammatory bowel disease, and raising awareness.
For more information, please call GYGIG at (866) 944-6848 or email us at  Riders and crew 18 and over may register online.  For information concerning riders and crew ages 12-17, call to obtain registration forms.  For more information and answers to FAQs, please visit
Come find out why it’s more than a ride!

Friday, August 9, 2013

Gloria Steinem Receives the Presidential Medal of Freedom

Congratulations to Gloria Steinem and the other recipients of the Presidential Medal of Freedom! Gloria Steinem, in addition to being a prominent writer and civil rights activist, has long been a supporter of Advocacy for Patients. She also was a close personal friend to our Founder, Jennifer Jaff. Her tireless work for women’s equality and the advancement of civil rights for all makes this recognition well-deserved. Congratulations Gloria! 

Tuesday, July 30, 2013

The YouToons Get Ready for Obamacare - Health Insurance Changes Coming Your Way Under the Affordable Care Act

We get a lot of questions from consumers about health reform and what to expect in 2014. This new video, from the Kaiser Family Foundation, provides a great overview of the major changes in the ACA, including the way Americans will access health coverage and what it will cost.
"The YouToons Get Ready for Obamacare," The Henry J. Kaiser Family Foundation, accessed July 30, 2013,

If the video does not format properly, please follow the link above to watch on YouTube.

Tuesday, July 9, 2013

Traveling With Health Conditions

Check out this timely article from Lynda Schrager on how to travel with a health condition. She provides great tips to organize and prepare for your trip, as well as suggestions to enhance your vacation experience!

Lynda is a breast cancer survivor, mother of a child with Crohn's disease, and daughter of parents who have had every disease in the book. She is the author of Otherwise Healthy®: A Planner to Focus Your Thoughts on Organizing Life after Being Diagnosed with Breast Cancer. She writes a weekly health column for the Albany Times Union called The Health Organizer. It appears in newspapers throughout the country. Lynda is the only member of the National Association of Professional Organizers specializing exclusively in the area of organizing health information, presenting keynote addresses and workshops in the area of breast cancer treatment, survivor issues and health and wellness.

Monday, June 17, 2013

Trusting Instincts

Yesterday was a Sunday like any other - I was working on my Masters thesis and transferring various loads of laundry from washer to dryer and contemplating vacuuming my house instead of watching The Golden Girls marathon on tvland (The Golden Girls won, by the way) when I remembered that my dog Beckett was out of his favorite beef-flavored treats. Since there is very little Beckett can eat thanks to a finicky digestive system that is probably the combined result of his slow-to-develop “runt of the litter” organs and my reliance on the most natural (read: most expensive) foods and treats on the market, I didn't want him to go through the week without the little freeze dried chews he looks forward to whenever he goes into his crate. So, even though I contemplated staying inside where it was warm and quiet, my “mommy guilt” got the best of me as I grabbed Beckett’s harness and leash. “Wanna go to Petco?” I asked. An unnecessary question, since I could barely get him into the car he was so excited.

The second we walked into the store, Beckett, who has memorized the layout and is, like me, a creature of habit, dragged me over to our regular first stop: the ferret cages. We always visit them first, and he loves to stand on his hind legs and peer at them while they slither around and play with each other and pretend to ignore him. He whines and paws and seems to think they can’t see him, though I suspect they fancy themselves better than him, as they turn their little noses up toward the ceiling and go about the business of simply being ferrets. As usual, though, his attention for the ferrets was short-lived yesterday, and within minutes he was pulling me toward the bird cages. Once again, he was on his hind legs, front paws in the air, head titling from side to side whenever the birds tweeted at him. I can never tell whether he is happy or sad to be outside their cages while they are locked inside, and I often wonder, when I look at him wanting so desperately to play with his little friends, which side seems more like captivity to him.

After Beckett sniffed a cute little cocker spaniel and failed to amuse an older, lethargic looking golden retriever, I finally coaxed him into the “cookie aisle” where he enjoyed his usual sniffing expedition of all the rawhides and meat-scented chewy things displayed at nose level. While I searched for the correct package and contemplated a new brand of biscuits, Beckett smelled and groaned and did his best to lick everything his little tongue could reach. Finally, I pulled the regular cookies off the shelf and did my best to tug Beckett toward the cash register. As usual, I had planned on a quick in-and-out, and, as usual, Beckett had planned on tasting everything (and everyone) he could reach.

As we headed to the front of the store, I stopped to price a package of squeaky toys hanging on the end of an aisle. And that was when a woman who looked to be about my age approached me. 

“He’s a sweet dog,” she smiled and nodded toward Beckett, who by then was frantically pawing at the pork bones just beyond his paws.

I thanked her, always worrying that I sound immodest when I admit that I actually do, in fact, have the sweetest dog on the planet. 

“Is he good with children?” she went on. I wasn't expecting that question, so I stuttered a bit before responding that, yes, he loves children, though he tends to jump and lick any person short enough to serve as a potential playmate, so perhaps not all children would agree.

“My little boy … was wondering ...” she hesitated. “He asked if he could pet the black doggie. So I just thought I’d see …”

“Oh of course he can,” I replied, saving her from what seemed to be an awkwardness I couldn't quite understand. After all, I was dressed in my Sunday sweat pants, unimposing pony tail, feeling relaxed and approachable and open to conversation (which isn't always the case, I admit with some regret), so I wasn't sure where her discomfort was coming from. 

Until her son walked around the corner. He was a beautiful little boy dressed in overalls and a turtleneck. He had a sweet, diamond-shaped face that looked too small for his large, square glasses. And he would not – could not – look at me, even when I said hello. He did, however, fix his gaze on Beckett while he pointed and repeated “pet the black doggie, pet the black doggie, pet the black doggie” over and over and over again.

“Yes,” his mother said. “You can pet the black doggie.”

Then she looked at me, seeming to struggle for words, until she was finally able to explain that her adorable son, who is seven, was diagnosed with autism several years ago. She and her husband had been wanting to get him a therapy dog, but he was so terrified of dogs that he become inconsolable and often aggressive anytime a dog was nearby. On the advice of one of the child’s counselors, the parents had been bringing him to Petco as a way of gradually exposing him to leashed, well-behaved dogs in a controlled environment, and so far, the mother told me, it had been working pretty well. The little boy could now walk through the store, could see and hear and even be in the same aisle with another dog, and not get upset. “Most of the time,” she added with a chuckle.

“But your dog is the first one he has ever wanted to pet,” she almost whispered.  She was trying not to cry, and, in all honesty, I was fighting back some tears myself.

“How wonderful,” was all I could manage, before squatting a safe distance away from the little boy so I didn't crowd him. “His name is Beckett,” I said. “And he would love for you to pet him.”   

Inside I was panicking. At seventeen months of age, Beckett is just now coming to terms with some of his training – probably because, after fifteen months as Beckett’s mom, I have finally learned how to train him (which first involved training myself). Even so, he still suffers occasional lapses, particularly in public places where he is overstimulated and more than willing to suffer the inevitable “Time Out” later for the sheer pleasure of misbehaving now. But this moment was critical. A lapse for Beckett could become a lifelong fear of dogs that this little boy would always trace back to today.

As I thought about all the things that could go wrong in this scenario, imagining every possible negative outcome, I suddenly realized that Beckett had stopped sniffing and pulling and begging for the bones and toys spilling out of the rack above him. Instead, while I had been talking to the boy’s mother, Beckett had been sitting perfectly still, staring at the little boy, the little boy staring back at him, both of them looking away from each other now and then, but neither of them reacting to anything outside of whatever communication they were having. Not even when other dogs walked by.

So I did the only thing I could do. I knelt beside Beckett and said “It’s ok, buddy.  Approach.” I was ready to pull his leash tight if he started to jump, but I could see, without a doubt, that he knew. He couldn't jump. Not this time. And he wouldn't. Instead, he approached the little boy slowly, gently, pushing his nose toward the tiny, outstretched hand until, eventually, child and dog touched. The little boy wiggled his fingers and Beckett licked them. The little boy waved his arms and Beckett followed them. The little boy crossed his legs and Beckett laid beside them. The little boy put his hands in his lap, and Beckett rested his head on top of them.

And we stayed like this, in silence, for twenty minutes. There was nothing else in the world except a mother and me, watching a little boy stroke Beckett’s head, his back, his tail.

“We've been working on this for years,” was all she seemed able to say. Though she was doing better than I was, as I stood there speechless, relieved, proud, inspired.

Before we parted, I gave the mom my phone number and told her that I would be happy to arrange get-togethers between her son and Beckett, if she thought it would help. She thanked me and assured me that she would call. And I hope she does. But more than anything, I hope that this beautiful little boy will now be open to the possibility of a therapy dog, and I like to think, if he is, that maybe Beckett had something to do with that.

It's funny how, even though instinct never fails me when I pay attention to it, I often doubt myself and others, always letting my fears interrupt the natural flow of things. Thankfully, Beckett knew what to do yesterday. And, despite my panic, I knew it was time to let him try. Even the mother who approached me knew that, scary as it was, she had to let her son pet a strange dog, and she had to have faith that he would be alright. Still, it was the little boy who taught all of us to put away our worries and our preconceived ideas and our fears about what may have happened in the past. To simply experience that single moment, when his instincts told him that Beckett was safe, when his instincts told me that all I needed to do was believe in my dog and trust that he would do the right thing. I am so glad I listened.

Guest Post, Heather Haskins

Tuesday, June 11, 2013

Estimating Your Healthcare Costs Using FAIR Health® Consumer Tools

For those who have chronic conditions, managing your health usually involves ongoing care and treatment.  And although your health is the main focus, it’s also important to manage and plan for costs related to your care.  This has always been true for patients without health insurance. And now, more and more insured patients including those with chronic conditions are assuming a larger portion of their healthcare costs, whether they’re enrolled in high deductible health plans or in other types of plans that require greater cost-sharing through co-pays and co-insurance.  Knowing how much you may owe for care can help you make informed healthcare decisions.  Use FAIR Health’s free website at  to research your out-of-pocket costs before getting a service or procedure that’s either not covered by insurance or that is out-of-network.  The website offers cost lookup tools that can be used to estimate out-of-pocket costs for medical and dental services in every area of the United States.  The estimates reflect common plan benefits and can be adjusted to match specific plan provisions.  The amounts estimated are based on the FAIR Health database of billions of billed charges for medical and dental services.

The website also offers educational features, such as the Reimbursement 101 curriculum, glossaries and healthcare resources to help consumers learn about, and better navigate, the healthcare system.  These tools and resources are also available in Spanish at and on a free mobile app, which you can download from iTunes and Googleplay.  
We invite you to use the FAIR Health consumer tools to estimate and plan your healthcare expenses, to inform discussions with your healthcare providers and insurers and to learn about the health insurance system.  We also encourage you to stay in touch with us by subscribing to our free quarterly consumer e-newsletter that offers tips on understanding and managing your healthcare costs and via Facebook and Twitter.
FAIR Health is an independent, not-for-profit organization created in 2009 with a mission to bring transparency to healthcare costs and health insurance information.  Learn more about FAIR Health’s mission here

Guest Post from FAIR Health, Inc.