I am Taking my Life Back!: Episode 2

Linda's Story



After living with Crohn's disease for 25 years my GI doctor in Michigan suggested I begin a support group. Little did I know that starting a CCFA Chapter in Lansing would benefit me as well as the patients who attended. I believe that we need support from others to live with a chronic illness but we must educate as well. I held monthly meetings for patients and their families and provided lists of recommended reading, showed videos, and talked about my own experience. When I contacted the newspaper and TV stations they told me that they would give me PR when I had a fundraiser to promote. I then realized that the best way to get the word out about Crohn's and Colitis is to hold fundraisers.



Because I was a committee of just me, I did it all. I wrote to tons of famous people and received all kinds of amazing items for the silent auction. The biggest items I received were 2 round-trip tickets from an airline. The woman at the airline called to tell me that they receive 2,000 letters a month and out of those, they picked mine. With these items, I held a bowl-a-thon/silent auction and raised several thousand dollars.


I also was able to show my appreciation for my GI of 20 years by naming him Physician of the Year. I had a movie gala (which they do a lot of in Michigan). His colleagues and family came, I presented him with a plaque which my daughter gave to him, we had food donated and everyone was given movie passes to see the movie of their choice. I asked everyone for donations to be included in the program we passed out - my dentist, insurance carrier, friends, relatives, everyone. Raised quite a bit for that event too which was satisfying.


In order to raise awareness about Crohn's disease, we must reach out to those with the disease as well as to the public to educate them on this illness. I'm having a set back now and am back on steroids which prompts me to work even harder for this walk and to make the people of Rochester aware of what the CCFA is doing to help us. I hope you will join me on May 16 at East Silver Lake Park in Rochester by registering today to raise awareness and funds to keep the mission of CCFA going in our own community!



The video below was posted on the Mayo Clinic's blog. Click on the link to read the whole story!



From Mayo blog: http://sharing.mayoclinic.org/2009/09/10/becoming-an-employee-after-35-years-as-a-mayo-patient/

~Linda , Rochester Take Steps 2010

Strength in Numbers!

Do you often feel like you won't be able to make a significant difference by yourself when it comes to finding a cure for Crohn's and Colitis? I know it is easy to think that the effort a single person can put in won't make much of an impact. However, when we all work together, it becomes much easier to make ourselves and our cause stand out.

The saying goes that wo heads are better than one. How about five, ten, or 1,000 heads? When it comes to the Take Steps walk, we encourage our participants to form teams of their frends, their family, their co-workers - anyone they can think of. Check out the following Flash Mob video to see how a large group acting towards one goal can make the people around them take a time-out during their busy lives to pause and take notice:

Two of our teams in the Twin Cities understand that "size matters" and have worked on building up large teams of family and friends to help extend the reach of our mission of finding a cure. Meet team "Semi-Colons" and "Team Valentyn!"

Semi-Colons

Lindsay Wright is the captain of team "Semi-Colons" which is made up mostly of campers and other counselors from CCFA's annual summer camp for kids with IBD: Camp Oasis. Lindsay's team already has 14 members and the walk is still over three months away! Lindsay has had Crohn's disease for over 12 years, and so she understands that there are often many obstacles and negatives in the lives of those suffering from IBD. However, she also knows that there is the potential for great strength among those who are fighting a common battle. She has used this, and has turned it into something positive for her team members. She uses the Take Steps team format to instill a positive competition between her team mates. "If you are walking by yourself, there is no one to push you to reach higher" Lindsay said. The final point Lindsay made was that one voice can be very soft, but many voices can force others to stop and take notice, as you saw in the video above.

Team Valentyn

Jessica was diagnosed in 2005 with Crohn's disease. Last year, Jessica walked with 7 team members and they raised over $2,000! Jessica employed the "phone tree" tactic of recruiting team members and spreading the word about the walk and her fundraising. For every person she asked, she asked them to ask ten other people to join them or to donate to them! Having a louder voice through her supportive team is so important to Jessica because she knows that a lot of people do not understand IBD. She knows that educating others is the ONLY way to raise enough awareness and funds to find a cure.

IBD can be an isolating disease, especially when others don't "get it." Can you think of a better remedy than gathering thousands of people to fight together?

~Lindsay, Semi Colons and Jessica, Team Valentyn

I am Taking my Life Back! Episode 1

Hi! My name is Holly. I am a Take Steps team captain, and my team name is "Poo on You Crohn's!" I chose this team name because this is exactly how I feel! Take a hike Crohn's! Move to the back seat! My life has been put on hold for far too long, and it is time for me to reclaim it!

Crohn's is different for everyone affected by it, but for me, I have been in and out of flares for almost 8 years now! That means that almost a quarter of my life so far has been spent not feeling well, and sometimes, feeling downright awful.

I am not a doctor or a scientist, but I knew I had to do something. Anything to feel in control of my health again.

Last year I joined the Take Steps walk for the first year and raised over $1,000! Suddenly I realized what frustration and passion for a cause could do: get results. Now, I am openly talking about my Crohn's disease and how important it is to find a cure. I know I am making a difference not only in the lives of others with IBD, but in my own life.

My name is Holly. I am an artist, I have wonderful, supportive friends and family, and I have Crohn's disease. But I am a fighter - and the war isn't over yet.

~Holly, Team Poo on You Crohn's!

Procrastination: A love/hate relationship

If you are anything like me, you don't have any time to spare during your daily life. However, I bet, also like me, you have time to watch a two-minute YouTube cat video.

Time is a funny thing. It is easily found when browsing YouTube or finding old friends on Facebook, but is often impossible to find when settling down to take care of business.

I was chatting with a Take Steps team captain about this the other day. She was fretting about how she hadn't sent a lot of her e-mails yet asking for support. I told her not to worry - that she had plenty of time. Can you believe it?! Me! The Take Steps Manager, let procrastination in!

She responded to my carefree attitude by telling me that the earlier she starts, the more she feels like she can enjoy the process of informing her friends and family about this cause that really is truly important to her. Waiting till the last minute only undermines the significance that this event really has in her life.

So...I am going to challenge myself to take 5 minutes this week and upload my e-mail address book into my Take Steps personal page. Then, I am going to send out my initial e-mail to my friends and family, asking them to support/join me the day of the walk.

Then, I am going to clean my house and vacuum my car.

Well...maybe not the last part. But procrastination will not beat me this week.

~Maggie Mau, Team Mau

Faces of IBD

Chances are you know someone with Crohn's or Colitis. You yourself may live with one of these diseases. So how come more people don't know about them?

One of the reasons is because people with chronic, painful diseases typically have to learn to accept a new "normal" when it comes to feeling well, and live their every day lives as best as they can.

This week we are going to honor some of our "Faces of IBD." These are people who take part in our Take Steps walk who are proud to live full, active lives, despite their battles with Crohn's and Colitis. Here are their stories:

Adam's Story

Adam is 13 years old and was diagnosed with Crohn's disease two years ago. This picture is of Adam swimming and maintaining an active lifestyle. Adam tries his hardest not to make Crohn's a "big deal" in his every day life. His Take Steps team, Adam's Challenge, literally emphasizes his view on his disease - as a challenge for him to overcome! And overcome it he will - by living life fully and fundraising for a cure!

Mylissa's Story

Hello! My name is Mylissa and last year my friends and I participated in the Take Steps walk. Our team name was the "Sizzlin' 7" and we won the "Team Spirit Award". I am 17 and a Senior and was diagnosed with Crohn's disease when I was 10. When I was diagnosed I was crushed; I felt like my life was over. However, looking back I feel like this disease has been the best thing that ever happened to me! I was given a chance to be part of a community that accepts me for who I am and after attending Camp Oasis for 7 years I haave great friends who support me in everything I do. I walk in the Take Step walk so one day young children with IBD won't have to worry about where the bathroom is. I am graduating from high school this year and I hope to go to college and major in chemistry and earn my Doctor of Pharmacy degree, so I can help people suffering from illnesses. My advice for others diagnosed with IBD is to not be ashamed of your disease. It makes you who you are and you need to stay positive. Some of my friends don't tell their friends they have IBD, but if your friends truly love you, they will stand by you and support you! Adam and Mylissa are two of the many faces of our friends who are fighting back against Crohn's and Colitis. At the Take Steps walks in May, you will see hundreds more! ~Maggie Mau, Adam and Mylissa

Minnesota v. Crohn's & Colitis

I talk to a lot of people every day whose lives are drastically affected by Crohn's disease or ulcerative colitis. Whether it is themselves, their parents, their sons, their daughters, or their friends, everyone generally feels the same way about IBD: that they have to do SOMETHING.

The first and easiest thing that all of us IBD-fighters can do is to to raise a little bit of much-needed awareness about these diseases in our own neighborhoods and cities. If you live anywhere near the Twin Cities or Rochester, there are two annual walks in May 2010 where you can take the opportunity to stop saying "I've been meaning to get involved" and start informing the people around you about how badly we need a cure.

Check out the video Jeff Passolt, a Twin Cities Fox 9 news anchor, made for us at the Crohn's and Colitis Foundation:

If you are serious about finding a cure and making Crohn's and Colitis household names, you need to act locally. Signing up to walk is easy and important. And fun. Just ask team "Pooper Troopers" or team "Plumbing Problems."

There: that's my pitch. From now on my posts will consist of real-life stories of real-life people who are raising awareness in Minnesota to find a cure for Crohn's & Colitis. And about how they LOVE doing it.

~Maggie Mau , Team Mau

Take Steps Twin Cities