Looking for people with type 1 to be featured in a documentary for T1D

Hi everyone!! My name is Jordan, and I have had diabetes for four years now. I live in Annapolis, MD, and am currently a senior in high school. I am looking for people to be in a documentary that I am creating with a friend to share their personal stories about their experiences and coping mechanisms with type 1 as well as the current technology they use to regulate their blood sugar on a daily basis. Please feel free to email me if you are near the area and would like to be featured in my video! I am hoping that when this documentary is finished it will be published and sent to JDRF to be seen by the entire T1D community. Any age is accepted I would love to have a wide range of people! My email is:
jordancox31@icloud.com

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Jordan,

I think this is a wonderful project and will certainly be helpful for educational material. I do not live in your area, but would be happy to contribute if you want to send out any questionnaires.

Regards,
Karen

Hi Karen,

Thank you so much for being willing to contribute to my project! I will let you know if there is something you would be able to participate in to contribute to my film. I am now in just the process of finding contacts and am only through a small portion of research and outlining to find out exactly what I want in the documentary and what questions I want answered by others in the type one community. I really appreciate you emailing me, and I will let you know when I have created a formal questionnaire of some sorts for the research!!!

Jordan

Hi Jordan. I think that is awesome that you’re doing a documentary I would love to help with that. I have been a T1D for 25 yrs.

Hey Jordan , I think is a pretty cool idea ! Let me start by saying I’m T1D 21 years strong and I work in the pipeline industry in North Dakota. My family thinks I’m nuts cause of the hard labor I endure on a daily basis but I don’t let this condition control my life … I control it. I’ve always been a strong positive person but some days well we’ll just say it’s hard to stay positive…

Jordan,

Take a look at some of what is already out there. It may provide you with some inspiration. Here is an example:

There are many things I don’t like about this video. I don’t care for the use of the term “diabetic.” We are people. Grace is a person. We and she have diabetes.

I don’t care for the use of the phrase, “She is difficult to control.” First, it is Grace’s diabetes that is difficult, not Grace. And the use of the term “control” implies there has been a failure on someone’s part when Grace’s blood glucose level is not where desired. I see no evidence of “failure” in this video. Instead, I see evidence of people who are trying to “manage” a difficult disorder that affects Grace. Diabetes is dynamic; it is not a disorder that can be “controlled” - it can only be “managed.” So, please use language that respects the people affected by this disorder. And please use language that really communicates what we can and cannot do.

There are many things I really love about this video; it communicates this family’s dedication to Grace. And it also communicates the vigilance required to manage this disorder.

There is something else I really love about this video - the cat! There is a lot of symbolism there. Look for it. Fantastic!

Hooray for Grace! Hooray for her family!

Good luck to you.

Bill

Hi Jordan

I got T1D when I was a freshman in HS that was 1972 so it’s been a while. If there is something that I can help you with by email I am happy to just let me know. I live in the Boston area so I can’t really get down there.

Good luck on this great endeavor!
Mike

Hi Jordan. My 9 year old daughter is T1D. If you could get her to talk about her diabetes period, I would be grateful. Sometimes it’s hard to get her to communicate with me because I’m Mom. We are right over the MD line in York, PA. It’s still a hike to Annapolis but if we met in the middle it wouldn’t be that bad. Let me know if you’d like a child’s perspective. She was dx Jan 2016.

Hi Heidi,

It is so great to hear from you and I would love to get to know your daughter and hear how she has been handling her T1D at such a young age and hopefully give her some advice!! I feel the same way with my mom, especially when I was first diagnosed, so I know exactly what she is going through!! I will be in MD all of July. What dates would work for you guys to meet, and any location for me is fine you name it! I can drive up closer to you guys, the distance is not too far. I will actually be in PA on July 13th and 15th in Phili if that is a convenient time for you guys!

Hi Jordan,
We would be available in July on the 7th or 13th. If you want to meet up close to the MD line or a little further in towards you, that would work for us. Looks like 1 hour 45 minutes to Annapolis, MD for us. Depends where you are in Philly also, distance wise. I know she won’t want me right there so we’d have to find somewhere that I can sit at another table, like a restaurant or something. I knew you would understand. She is really shy but she might like the attention. I’m not sure.

Heidi S Roseberry

Hi Jordan, your project sounds like it can be interesting particularly for fairly new Type Ones but also for us that have been around a long time. I am now 87 and have been diabetic for 72 years without any complications and did not even have a blood glucose monitor for over 30 years. I now have a Medtronic 630G & a Dexcom G5 CGM. My story goes from the days when I really had nothing to work with but a syringe and two early versions of insulin. My only real control was just diet & trying to “check” my blood sugar using urine. No real tools like we have today with blood glucose monitors, pumps, pens, and CGMs. I would be happy if I can aid you in your project in some way. I also know of another diabetic who also has been diabetic for 72 years. His name is Richard Vaughn and can be reached via facebook. He has a book about his journey. Good luck to you in your project. There are many good facebook sites to learn a lot about other diabetics journey with diabetes and these might be good to use in your research. Here’s hoping your future will be a good one. Leon Ullrich - rlu53@comcast.net

Heidi,
I was looking at some places that may be good to meet you guys, some place in between York and Philadelphia, and I came across Long’s Park in Lancaster, PA. I think it is roughly 30-40 minutes away from you guys. I am hoping your daughter would feel more comfortable in a setting like this to talk to me as well as my friend who is also working on the documentary. I was looking at the park and saw a few playgrounds around the park as well as a free petting zoo that she may like to go check out!

That sounds great! We would love to do that. When is good for you? Please message me privately. Thanks,

Hi Mr. Ullrich,

It is so great to hear from you! That is awesome that you have been able to manage your T1D for such a long time, I am in shock you are amazing!! I would love to meet you as well as Mr. Vaughn and hear about how you managed your blood sugars when you were younger compared today and to just head your story!! Where do you live? I am located in the Annapolis area of Maryland…

Best,

Jordan Cox

Hi Jordan, thank you for your note to me. We are having a big Sunday School party at our home on Friday and am helping my wife get better then I have a few days after that before we go on vacation to Iceland with our son and his wife – so will just have to see what I can describe to you for the time in between. I forgot when we return from Iceland on July 22nd we will have four visitors from Denmark staying with us. One of these four lived with us as an exchange student in the late 1970s so that is some added commitment, but I will get something done for you as soon as I can. Might also comment that we have a daughter (one of our three) who has been diabetic since she was 5 years old and is 60 today. She and I are both Joslin 50 year medalist. l have been active in JDRF for many years serving on the Houston Gulf Coast Chapter’s Board and have spoken at some of their meetings in recent years and participated in Walks as well as serving as a Mentor and Advocate… I live in Bellaire, Texas which is right in the middle of Houston Texas. Leon

I am clear on the other side of the country than you. But if I can participate remotely I’d ve interested. I’ve had T1D for coming up on 41 years in August.

I would love to help you out! I live in Crofton, MD, I’m 45, and I was diagnosed with Type 1 about a year ago. I use the Freestyle Libre and MDI to control my diabetes, as well as eat a low carb diet and exercise.

Hi Jordan,
What a great idea you have going! I Iive in VA , about 30 min. south of Richmond. I was diagnosed at 10 and am 43 now. If you’re still looking for participants in your documentary just let me know. Thx! Tomeika
tmood38@gmail.com

Hi tjere! Jordan.
I’ve always loved that name!
I’m a mom of a T1D and would love to connect and contribute in any way. Just let me know here on this thread.
I have a sneaky suspicion that my son may have inherited Type 1. My grandma had T1D and I think my sons dad’s mom also has T1D.

Hi Heidi,

I’m so sorry that it has been awhile since we had last spoke. I was recently in Guatemala, and my phone had broke down so my message to you apparently did not send!! Early July does not work as well for me due to a few changes in my schedule, but I would still love to meet you and your daughter! I am free in the later part of July as well as August (after August 16th) if any days there work for you. If you guys are still able to meet up, do you think your daughter would rather meet at a restaurant or more of an outdoors area like a park?

Best,

Jordan Cox