Posts filed under ‘IBD News’
While a mention of the United States Congress is often met with an exacerbated sigh, we IBDers and caregivers have a reason to thank our Congressmen and women this new year. The week prior to Christmas, Congress gave us a gift by passing the Fiscal Year (FY) 2016 spending bill. The bill included $32 billion for the National Institutes of Health (NIH), which funds important medical research on a wide array of illnesses, including inflammatory bowel diseases. This is funding increase of $2 billion from the previous year represents a significant commitment by Congress to finding cures.
In the bill, Congress also supported the Inflammatory Bowel Diseases Epidemiology Study in the Centers for Disease Control and Prevention.
While this sounds all great on paper, I wasn’t sure what exactly this meant for patients like me. To answer my questions, I spoke with Sarah Buchanan, Director of Advocacy at the Crohn’s and Colitis Foundation of America, for more information. Here’s what I learned:
I’ve written before about the Restroom Access Act (Ally’s Law) and how important it is to get it passed in states across the country in order to ensure that patients with inflammatory bowel disease and other illnesses are able to access employee only restrooms in stores when a public one is not available.
Well New York, it’s your turn to act!
In 2013, the New York State legislature attempted to pass the Restroom Access Act but it was never brought up for a vote. Earlier this year, Assemblywoman Amy Paulin (D-88) and Senator Kemp Hannon (R-Nassau) introduced the bipartisan Crohn’s and Colitis Fairness Act in the New York State Assembly and Senate. If passed, this bill would amend New York State public health law to provide individuals with “Crohn’s disease, ulcerative colitis, irritable bowel syndrome, or any other medical condition that requires immediate access to a toilet facility” access to employee-only bathrooms when a public one is not available.
Sounds great, right? It would be, but it won’t pass without your help.
On June 17, 2015, the New York State Senate will vote on the Crohn’s & Colitis Fairness Act. In order to gain support and ensure that we get as many votes as possible, we need to join forces with the Crohn’s & Colitis Foundation of America to lobby our legislators to support this bill. So if you live anywhere in New York, here’s what you need to do between now and June 17:
- Identify who your New York State Senator is here (if your Senator is Senator Hannon or bill cosponsor Senator Simcha Felder, email them and thank them for their support!)
- Either email them, call their office or visit and ask for their support of S4918, the Crohn’s and Colitis Fairness Act
- Ask your friends and family to do the same
- Don’t live in New York? You can still help by reaching out to New York State Senate Leadership and urging them to support the bill
Taking action takes less than five minutes. To make it even easier, here are two draft emails that you can use to send to your legislator:
It’s up to you, New York, to make this bill become a law.
When I sat down with Rick Geswell, president & CEO of the Crohn’s & Colitis Foundation of America (CCFA) in September, I knew the conversation would focus primarily around CCFA’s Genetics and Microbiome Initiative. I had seen the video that CCFA put out but beyond that, knew very little about the two initiatives and definitely had no idea how microbiota are linked to Crohn’s disease and ulcerative colitis. But what I learned about it is fascinating.
It’s that time of the year again.
Dan and I are back at it, raising money for the Crohn’s and Colitis Foundation of American through its Team Challenge program. We will be training to run/walk in the Jamestown Half Marathon this July and we couldn’t be more excited!
Last year we raised $7,500 for CCFA and this year we are upping our goal and hoping to raise $10,000 in the name of research and education about these debilitating diseases.
Shop vintage, benefit CCFA!
From now until February 10, The Vintage Twin, an AWESOME vintage goods company specializing in one-of-a-kind vintage finds, is donating 10% of its online sales to our fundraising efforts for CCFA. Check out their awesome clothing, accessories and other goods and shop early & often!
Happy New Year’s Eve everyone!
This past year has been an exciting one for Dan and I, both online and offline. In the past year, Caring for Crohn’s & UC expanded incredibly- while I wrote far fewer posts than last year, the blog received over 19,000 views and gained This year, Caring for Crohn’s & UC exploded beyond my wildest dreams, having over 19,000 views by over 10,000 visitors, and gained 45 WordPress followers, 9 Tumblr followers, 131 Facebook fans and 213 Twitter followers. (Disclaimer: I am a huge analytics nerd, so please forgive me for being so excited over these numbers :-)) Thank you all SO much for your continued readership and support- while I haven’t kept up with posting as frequently as I want to, I am so happy that the content I wrote over the past two years has reached so many of you. It’s all in the name of raising awareness and educating others about inflammatory bowel diseases.
Enough about the numbers- here are some of my 2013 highlights.
Happy Crohn’s and Colitis Awareness Week everyone!
Today marks the beginning of Crohn’s and Colitis Awareness Week 2013 and more than ever, I can’t stress the importance of this week for raising awareness and educating others about inflammatory bowel diseases.
Before Dan was diagnosed, I didn’t know much about IBD. In fact I was one of those people who thought IBD and IBS were one in the same (I now know that they are most definitely not).
In the almost seven years since Dan was first diagnosed with Crohn’s disease, I have learned more about these debilitating diseases than I ever imagined I would. I have witnessed the good and the bad- colonoscopies, hospitalizations, surgeries, medications, tens of thousands of dollars in medical bills- you name it, Dan and I have been through it.
I have also been able to raise awareness and educate others who knew nothing about the disease learn about why Crohn’s disease and ulcerative colitis are not just pooping diseases. Through Team Challenge and Take Steps, over the past three years Dan and I raised over $21,000 for research and education of Crohn’s disease and ulcerative colitis.
But I’ve also had the pleasure of meeting incredible people who are battling these diseases and have become my second inspiration for raising awareness.
Earlier this week, a story came out on WCPO, a local news station in Cincinnati, about the Cincinnati Police Department’s newest initiative to try and deter at-risk youth from entering into a life of violence. Sounds great, right? Well it would be if they weren’t using images of people with ostomy bags as the deterrent. In fact, in the story Lieutenant Joe Richardson says,
“You’re not killed, but you’re walking around with a colostomy bag and that’s just not the way to get a girl’s attention, by limping down Warsaw Avenue with a colostomy bag.”
If that’s not offensive, I’m not sure what is.
Well, the IBD community is fighting back against this distasteful discrimination against those with Crohn’s disease, ulcerative colitis, colorectal cancer and other ailments who live everyday with ostomies and lead full, meaningful lives.
Yesterday, the Huffington Post ran a piece I wrote with Stephanie Hughes from The Stolen Colon about this new initiative and why it’s not okay to further stigmatize ostomates. Here’s a snippet from the piece:
There are more than 500,000 people in the United States living with ostomies for a variety of reasons, including Crohn’s disease, ulcerative colitis and colon cancer. These people live normal lives — they have meaningful emotional and physical relationships, hold jobs, and go swimming, rock climbing, sky diving and every other activity under the moon. Ostomies, for many, are not a punishment — they often mark the beginning of a new, pain-free life.
There is also a petition circulating urging the police department to apologize and stop discriminating against ostomates.
Lastly, we are using the hashtag #OstomyIsNotATragedy on all social media outlets to track people’s efforts to reach out to the CPD and urge them to stop this initiative.
So get involved everyone! Sign the petition and take to the social media universe and let’s all stand together telling the Cincinnati Police Department that an #OstomyIsNotATragedy!