With our annual Innovation Summit coming up in mid-November, it's been fun over the past several weeks sharing the stories of the PWDs selected as winners of our 2014 DiabetesMine Patient Voices Scholarship Contest. Today, we're happy to introduce two more D-friends who will be joining us at the event as Patient Community Delegates -- Merle Gleeson and Karen Graffeo, both longtime type 1s.
Both were volunteer DOC judges who helped select our scholarship winners, but most importantly they've been powerful advocates working to make a difference in the world of diabetes for many years. Merle was diagnosed as a child more than a half-century ago, and is most well-known for founding a great group called Type 1 Diabetes Lounge in Chicago back in the late 90s. Karen's in Connecticut and was 11 years old when she was diagnosed in 1979, and these days has her hands in many advocacy channels -- her blog Bitter-Sweet and creation of the annual Diabetes Blog Week among them.
We are thrilled to welcome them as participants in our 2014 Innovation Summit, and just as happy to share more from them in this joint Q&A today:
DM) First, please tell us a little about yourselves...
MG) I'm a Chicago girl at heart having been born and raised in this wonderful city. I currently reside in a northern suburb with my husband in the same house where I raised my two children. My early career was in real estate sales and later years in property management. Professionally, I now spend most of my time volunteering for the non-profit group I found way back in 1997.
KG) I live in Connecticut with my husband and my little cat. In fact, I've lived in Connecticut my entire life, aside from two years in college outside of Boston. After college I worked for 15 years in cable TV advertising before deciding it was time to move on. Right now I'm doing some freelance diabetes writing, including regular contributions to the Medtronic blog The Loop, as well as plenty of volunteer work. I often say I'm still trying to figure out what I want to be when I grow up, and I'm excited to follow my current diabetes advocacy path and see where it leads.
And your diabetes story?
MG) As a child I spent a good deal of time visiting my grandparents. How I enjoyed being spoiled with their love and attention! During one visit, my grandmother recognized the symptoms of my insatiable thirst and frequent visits to the bathroom. She asked my father to have this checked out by my doctor. I remember the moment we got the bad news. As I sat on the edge of Dr. Peckler's examination table, I heard the words but focused on a single strand of hair blowing around his bald head. I laughed when he reached up and pulled out his last final strand. I knew my parents were devastated but I was too young to comprehend the seriousness of this life-changing diagnosis.
It was a different world in 1963, medical conditions were not openly discussed and very little information available to us. Treatment was ancient compared to today and a life shortened by complications was to be expected. I was fortunate to make it through those years without any serious complications. Last year I became a Joslin 50-Year Medalist and participated in two studies examining outcomes of long-term diabetes. The Joslin Diabetes Center 50-Year Medal Program recognizes individuals who have lived with insulin-dependent diabetes for 50 years to honor their accomplishments in diabetes management. I'm one of the fortunate to be part of this elite group!
KG) I was diagnosed with type 1 back in 1979 when I was 11 years old. In my younger days I didn't want anyone to know I had diabetes and went to great lengths to hide it. Luckily, with age came a little more confidence and wisdom, and I began to understand that living with diabetes isn't anything to be ashamed of. Instead of viewing diabetes as something that makes me different, I try to look at it as something that makes me a little bit stronger.
How did you get into diabetes advocacy and the DOC (Diabetes Online Community)?
MG) I never thought of my volunteer work as advocacy but now realize that's exactly what I've been doing long before the term was used. It wasn't until 30 years after my diagnosis that I met a few T1D women with whom I could finally share my diabetes life. I found this experience to be so profound I knew I needed to keep these meetings going. My doctor's office allowed us to use their conference room and invited other patients to join our monthly meet-ups. Seventeen years later, this little group has has evolved into the Type 1 Diabetes Lounge, a significant not-for-profit education and support network known throughout Chicago-land. Our monthly meetings include doctors speaking on related topics, medical reps sharing the latest in diabetes technology and in-person peer-to-peer support. I've partnered with the University of Chicago on educational seminars and JDRF for Diabetes Heath Fairs. I appealed to my State Representative to increase funding for type 1 diabetes research. At this time I'm working on obtaining Medicare coverage for continuous glucose monitoring. My rewards are the testimonials from people whose lives I've touched.
KG) My DOC involvement and D-advocacy all started with my blog, Bitter-Sweet, that I began writing in 2008. It helps me connect with others just like me, many of whom have become close friends both online and in real life. Over the years I've been fortunate to find many advocacy opportunities in both the DOC and offline. I volunteer for two local JDRF chapters, as the Advocacy Team Chairperson and on the Adult T1 Group planning committee. I'm on the Board of Directors for both a local chapter of JDRF and the Diabetes Community Advocacy Foundation. I'm also a member of the Medtronic Patient Ambassador Group.
Life obviously isn't all about diabetes, so please tell us something about yourself that isn't D-related...
MG) Where do I begin? I spend a good deal of my time helping people in various ways. If it's not diabetes related it may be with homeless organizations providing food and housing. I believe laughter is the best medicine (next to insulin of course) and find humor in many situations. I work hard at staying healthy and try to eat right. Part of my daily routine is exercise. My real passion is cycling and when I'm not on my bike I can be found working out at the gym. Living near Lake Michigan allows me to enjoy long walks around the beach. I find landscaping and planting in my garden therapeutic. My husband and I take in the culture of Chicago by way of theater, music, museums and art. So much to do and so little time!
KG) Lately I've been obsessed with working on my house. I bought it on my own in 1999, a few weeks before I started dating my now-husband Pete. Back when I first moved in, I didn't have the finances or the skills to do everything I wanted to do in my old house, which was built in 1921. But now Pete and I have been working together on home improvements and redecorating projects, and last year we hired contractors to gut and redo our kitchen. I could easily spend hours on home decorating and renovation sites and watching shows on HGTV for ideas as we finish up the last few rooms that need some TLC.
MG) I'm so impressed by this wonderful group of enthusiastic and well-informed young people! What impresses me most is that nobody allows their chronic disease to get in the way of them enjoying their life to its fullest. By openly and honestly sharing their stories, these winners are the voices and role-models for many others in the T1D community.
KG) I was very impressed by how experienced the applicants were with D-data and diabetes technology. It was also wonderful to see applicants so enthusiastic about advocacy. The applicants were so well-spoken and intelligent and I'm really looking forward to getting together with this inspiring group.
Generally speaking, what would you say about the current state of affairs on diabetes tech and innovations?
MG) For most of my life diabetes technology didn't exist. During the past 30 years, diabetes management witnessed enormous changes in glucose measurement, insulin administration and types of insulin. I'm so excited by the speed at which technology is moving with smarter, friendlier devices, and wireless connections including information sharing. Nearly every day I'm reading about some new amazing device which will improve the quality of live for people living with T1D!
KG) I feel like now is a very exciting time with a lot of new tech, treatments and innovations on the horizon. I've been following news of clinical trials for the Artificial Pancreas and islet cell encapsulation. I've watched tech innovations like Nightscout/CGM in the Cloud. And I've joined movements asking FDA, Medicare and private insurance companies to make new tech and innovations accessible to all patients. I feel like we are moving forward, but we need ongoing work and advocacy to make sure this forward momentum continues.
Have you been to other diabetes conferences or events to advocate? If so, what have those experiences been like?
MG) In July, I attended the Diabetes Hands Foundation Master Lab conference in Orlando and learned from many successful diabetes advocates with a diverse background of advocacy and industry experts. My recap of this incredible event is included in the event coverage here at DiabetesMine.
KG) I've been to several different types of conferences, and overall I think it's always so important for patients to share their stories. At conferences like Friends for Life and DiabetesSisters, we share our stories with our peers and create bonds and support systems. At Pharma summits held by companies such as Roche and Medtronic, we're sharing our stories and needs with the manufacturers that make the products we use. And at JDRF Government Day, we share our stories with our government representatives who vote on policies and funding that effects us. I value every opportunity to share my story and help others understand what living with diabetes is really like.
Any expectations you have going into this year's Summit, and what you hope to bring to the event or take home?
MG) I expect to leave the Summit more educated and informed with a better understanding of diabetes medical devices and technology. I look forward to meeting with bloggers I've been following as well as product designers physicians and industry experts involved with cutting-edge diabetes products. I plan to share what I learn with members of the Type 1 Diabetes Lounge at our December holiday party!
KG) This will be my first time at the DiabetesMine Summit, so I'm very excited for the opportunity. I look forward to reconnecting with some advocates I already know, and meeting others whom I haven't met yet. I'm excited to share our stories once again and help advocate for the things we need to live healthy and happy lives. And I know I'll come home very inspired, because inspiration is definitely something I've taken home from every conference I've attended.
Thank you both for sharing your stories with us, and we can't wait to see you in November!