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Guest Post: The College Diabetes Network.

ChristinaWhat would have made college easier for me, diabetes-wise?  Having the diabetes online community.  Unfortunately, at that point in my life, I didn't really know anyone else who had diabetes, so I was a health soloist instead of part of this incredible, chronic choir.  

Christina Roth, founder of the College Diabetes Network, has created what I wish had been there for me.  And today, she's taking some time to share her story, and to encourage others to get connected.

SUM: What gave you the idea to start CDN? 

Christina: Having been diagnosed at the age of 14, in the midst of those rebellious teenage years, I wanted nothing to do with diabetes in high school. It wasn’t until college that I felt ready to connect with other people with diabetes, but when I reached out to other students I found that there was no way to connect with anyone. I had met a nurse practitioner at our university health services who had had diabetes for 30 years before getting a pancreatic transplant. Before meeting her I had never talked with another diabetic, I had never experienced anything like it, it was freeing. We started talking about how great it would be to connect all of the diabetics on campus, as she saw several of them as patients and thought that they would also benefit from connecting. At the time, I had also heard about a group that a few students at Harvard had tried to start several years before, but found all of the links and information on their webpage to be out of date.

So we decided to start a group on campus, but in order to get information out about the group, I realized we needed a website that we could refer people to. Over my winter break that year I met with a webdesigner and put together the website. All of the information was specific to UMass, as at that point the thought of this being any more than a UMass student group had never crossed my mind, nor would I have ever believed it to be possible.

We were able to get information out about CDN by referring people to the website and had our first meeting at the beginning of the Spring semester. We had booked the room for about 1-1 ½ hours and ended up all staying and talking for over 3.

When I started receiving emails asking how students could start similar groups on their campuses, I decided that we needed to make this information available, and of course expand the website so that each school would have a page, as it was such a key part of our success at UMass. From there everything just kind of snowballed into what it is now. We added several new chapters, completely redesigned and relaunched the website, and got our 501c3 status from the IRS. I’m not quite sure how it happened…but CDN has become my full-time job (in addition to my real-life full time job…), as well as my passion. Although we didn’t start out to create a national organization for students, I feel that the grassroots way in which we have come into being is what makes us so successful. CDN knows the support and resources that are needed by students because the organization was created by students and is run by students.

There are many people, who without their expertise and willingness to help and donate their time, CDN would not exist (and I would have lost my mind a long time ago!).

Click here to visit the CDN website.

SUM:  Do you plan on extending to more schools? 

Christina:  We are always looking to expand and create chapters at new schools, or to register existing student groups. We currently have about 20 chapters, all randomly located throughout the country. CDN provides the resources for these groups to get started and to succeed, but the groups themselves are run by students on campus and are based around the needs and desires of their members. Through my own experience with CDN at UMass, it is the peer support and the friendships that the group fosters that empowers and motivates people.

SUM:  I see you have a “students” section as well as a “parents” section which is an incredibly important aspect of PWD going away to college. Do you get a lot of parent activity with CDN?  Do the parents ask questions that you try and find resources/answers for?

Christina:  Our parent section was added because of the discussions that came up in some of the meetings that we had at UMass. I actually worked very closely with my mom, using her own personal experiences, to set up the original information and tips that went in that section of the site. As the organization has grown, we are expanding the resources available for parents. The most exciting of which, in my opinion, is an online networking community where they can connect with other parents of college students to help support one another. We are working with the Diabetes Hands Foundation through TuDiabetes to set up this exciting new addition.

As word has spread about CDN, I have received many emails and phone calls from nervous parents. These parents are mainly seeking reassurance and want to know how they can help to keep their child safe. Speaking with these parents is a big reason why we are expanding the resources for parents, as it has made it apparent that there is a bigger need than we had expected.

A few weeks ago I was actually at the Boston ADA Youth Leader Summit, which is the annual kick off event for this amazing program for teens. At the event, CDN held a focus group for parents, where we collected information about the fears and needs of parents whose children will be leaving high school and entering college. The information from events like this and feedback from parents are helping us to design our resources to match these needs.
    
SUM:  What do you think are the most important aspects of being involved with CDN, as a student or a parent?

Christina:  I think that the most important aspects of CDN, for both students and parents, are the community we create through our in-person and online resources, and the access to information that the CDN website provides. Our website helps to connect people to information relevant to their lives and their health, and our communities help provide the motivation and support to use that information.

SUM:  If a student wants to start a group at their college, how would they get going?

Christina:  If as student wants to start a group it is very easy, simply email us at croth@collegediabetesnetwork.org and we will create a webpage and a CDN email address for their chapter. We then help walk them through the steps to creating and setting up their group, from reaching out to other students, to registering as a student organization on campus, we provide the support and resources to make this process as easy as possible.

SUM: What's next for you guys? 


Christina:  We are currently working on several projects, most of which are aimed at improving the delivery of our resources and further establishing the information to better enable us to carry out our mission. As we were started when I was in college, we have had to generate our own funding through grassroots sources and have subsisted solely off of time dedicated by volunteers. We are working on securing funding and expanding our leadership which will enable us to progress to the “next level” as an organization.

SUM:  Thank you, Christina, for helping connect people with diabetes in a way that has impacted so many!  You are amazing, and we're excited to see the College Diabetes Network achieve that next level!

*   *   *

Christina was diagnosed with Type 1 diabetes when she was 14 years old and grew up near Boston, MA. She attended the University of Massachusetts Amherst where she earned her degree in psychology and started the College Diabetes Network (CDN).

You can find more information about CDN here:
Website: www.CollegeDiabetesNetwork.org
Facebook: College Diabetes Network
Twitter: @CollegeDiabetes

Comments

Christina -- Nice work!

do you have an aunt with Type 1? If yes she is my childhood friend from Sandhills Beach . . .

Hi Moira,
Yes I do actually! She says hi! I can't find your email, feel free to email me at croth@collegediabetesnetwork.org and we can talk more!

This is a really interesting group - and insightful interview. Funnily enough, I also did not really get involved or try to reach out to the diabetes community until after I graduated. I just saw it as a burden I had to carry on my own. I can definitely see how this site would help though - the more connected people are, especially with others their own age, the better they will be able to deal with the challenges that come with the condition.

I met Christina at FFL 2011. She's great, and very motivated to help as many as she can. I'm proud of her and all she's doing, and support her 100%.

Tina, thank you so much for all the wonderful work you have done with CDN! (I was so excited to see your picture on this blog - we miss you!!)

I had never talked to any other diabetics until I started attending CDN meetings and it has been such a wonderful (and hilariously fun...) experience. Lived diabetes is so different from the diabetes in textbooks and finding support groups where we can talk honestly about the fears and absurdities and joys and victories and temporary defeats (and have the presence of health care professionals to answer all those weird questions)... it's such a great thing.

You're a star! Come visit us soon!

Hi Christina,
I work for Medtronic Diabetes, and have also had T1DM since 14!
My clinical counterpart recommended that I touch base with you.
Are you still involved with UMass college?

Sincerely,

Jake

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