2010 National Youth Advocate Amy Johnson
Meet Amy Johnson, our 2010 National Youth Advocate.
Amy was diagnosed with type 1 diabetes after a ski trip in 2004. "I realized each time I got to the top of a hill, I had to quickly ski down and take a long drink because I was so thirsty," said Amy. "These first signs caused me to originally go to my physician and check my blood sugar for the first time."
As the National Youth Advocate, Amy will spend the year traveling around the country encouraging young people and adults to get involved in the fight against diabetes. She will also meet with elected officials and encourage them to increase funding for diabetes research and prevention, ensure people with diabetes have access to quality and affordable health care, and make sure people with diabetes are not discriminated against in school or in the workplace.
- Age: 18
- Location: Kansas City, Missouri
- Favorite Sport: Tae Kwon Do
- Future career plans: Become a pediatric surgeon or cardiologist
- Goals as the National Youth Advocate: "I am going to try and open up further discussions on everything from new diabetes technology, like automated glucose monitoring systems, to health care reform updates concerning young people. Youth need to understand what the ADA does, why we do these things and the importance of their involvement in advocacy."
Amy Johnson's 2010 Blog
December 8, 2010
Hey guys and gals! I'm wrapping up my college finals and wanted to give a quick shout out to you!
I need some help though- if you have a minute, head over to www.stopdiabetes.com/vote and help the American Diabetes Association win funding from American Express through Members Project®. The Association has the opportunity to win $200,000. We have some tough competition and every vote will help push us to number #1. Thanks for your help!
November 5, 2010
Recently I took part in a diabetes awareness and fundraising event unlike any other I have been a part of. The High Five for Fashion show held recently in Kansas allowed me to strut the runway and help the American Diabetes Association out at the same time! This event featured trendy vendors, raffles, and a high-energy fashion show.
Don’t worry advocates- on my first walk I made it to the end of the run way, whipped around, and flashed that shiny insulin pump for all to see! Cheers and claps erupted as I was once again reminded of my supportive diabetes community and their equal desire to fight this thing as creatively as we can.
September 1, 2010
Hey advocates! I hope school is going well for everyone. I recently began my semester at the University of Missouri-Kansas City and have been slowly but surely adjusting to the microcosm that is college life. Oddly enough, I have been having low blood sugar readings like crazy! I think I’ve choked down more glucose tablets in the past seven days than I have in the past seven months!
If you have diabetes, you know how frustrating it is to feel as though you have no control. Yes, I’ve been checking my blood 10-15 times a day. But sometimes testing your glucose isn’t enough. Sometimes diabetes chooses to come out of the peaceful woodwork and do battle with your sense of normalcy. Almost always, this insulin vs. glucose war decides to rage on in the wee hours of the morning, right before a lengthy set of notes to copy down, or whenever it decides would be most inconvenient or troubling to my agenda.
As I lay in my bed, I experienced a terrible loneliness- a longing for someone, anyone, to come along and reassure me. I have never felt so sad about my diabetes before; usually I’m around all sorts of other people who either know about it or have it themselves. This time, it was just me. And believe me, dealing with diabetes is *never* something to do alone.
The next morning, I reported to the ‘rush,’ or pledge ceremony into a sorority, and promptly met a girl just like me- brunette, athletic, and a person with diabetes! I was instantly filled with relief and joy. We immediately started to talk about her OmniPod, and by the day’s end I knew I had someone to count on for support and encouragement. It is so important to have friends who can understand what you are going through. Whether through camp, a biking event, or even the local coffeehouse, you will never have to go far to find someone else affected by diabetes! Don’t be afraid to reach out and make those new acquaintances- you never know who you might end up helping, or who might help you in return.
July 1, 2010
Crystal Jackson is considered an expert in the rights and legal protections offered to children with diabetes in schools. Because managing diabetes is a 24/7 job, it is important to have support at school as well. The American Diabetes Association’s Safe at School campaign offers resources about diabetes care at school as well as legal advocacy to those in need of help working with the school to develop written management plans. It is extremely important that schools provide a medically safe environment for students with diabetes. They must have the same access to educational opportunities and school-related activities as their peers. The Safe at School campaign consists of three principles: • All school staff members need to have a basic knowledge of diabetes and know who to contact for help. • The school nurse is the primary provider of diabetes care, but other school personnel must be trained to perform diabetes care tasks when the school nurse is not present. • Students should be permitted to provide self-care whenever they are at school. To ensure all of these principles are met, a written care plan must be created. Access to equipment, medication, and assistance is essential to this plan, which aims to make the transition from home to school (and vice versa) smooth each weekday. Parents have a responsibility in this, too - to be a resource for the school nurse, be accessible to the school, encourage age-appropriate self-care for the child, provide the school with proper equipment/food/supplies, and get the physician’s orders for the school. The responsibilities of the school include implementing the physician’s orders, complying with laws, working with the parents to develop a working management plan, training school staff, and communicating with parents. There are two main federal laws that protect children with diabetes at school: the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973. Only schools that do not receive federal funds are exempt from following the ADA and 504 legal protections. Section 504 of the Rehabilitation Act of 1973 offers up the right to form a "504 plan" within the school. This applies to public and private schools receiving federal funds. The ADA covers daycares and camps as well, unlike Section 504. The ADA applies to Americans with a disability - a physical or mental impairment that can limit one or more major life activities, including endocrine function. This does not mean we are disabled! Our pancreas doesn’t work right, so we need to assert our rights as people with diabetes and not get caught up in silly labeling. It is of paramount importance that all children and youth attending a publicly-funded school assert their rights and ensure their wellbeing to the fullest extent of the law as offered by 504 plans and the Americans with Disabilities Act. I needed a 504 plan at my high school to make sure there would be no questions as to whether I could check my blood sugar during class or give myself an injection/bolus while learning. Just as diabetes should not disrupt your goals, diabetes does not need to interrupt your learning process either!
Crystal Jackson is considered an expert in the rights and legal protections offered to children with diabetes in schools. Because managing diabetes is a 24/7 job, it is important to have support at school as well. The American Diabetes Association’s Safe at School campaign offers resources about diabetes care at school as well as legal advocacy to those in need of help working with the school to develop written management plans.
It is extremely important that schools provide a medically safe environment for students with diabetes. They must have the same access to educational opportunities and school-related activities as their peers. The Safe at School campaign consists of three principles:
• All school staff members need to have a basic knowledge of diabetes and know who to contact for help.
• The school nurse is the primary provider of diabetes care, but other school personnel must be trained to perform diabetes care tasks when the school nurse is not present.
• Students should be permitted to provide self-care whenever they are at school.
To ensure all of these principles are met, a written care plan must be created. Access to equipment, medication, and assistance is essential to this plan, which aims to make the transition from home to school (and vice versa) smooth each weekday. Parents have a responsibility in this, too - to be a resource for the school nurse, be accessible to the school, encourage age-appropriate self-care for the child, provide the school with proper equipment/food/supplies, and get the physician’s orders for the school. The responsibilities of the school include implementing the physician’s orders, complying with laws, working with the parents to develop a working management plan, training school staff, and communicating with parents.
There are two main federal laws that protect children with diabetes at school: the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973. Only schools that do not receive federal funds are exempt from following the ADA and 504 legal protections. Section 504 of the Rehabilitation Act of 1973 offers up the right to form a "504 plan" within the school. This applies to public and private schools receiving federal funds. The ADA covers daycares and camps as well, unlike Section 504. The ADA applies to Americans with a disability - a physical or mental impairment that can limit one or more major life activities, including endocrine function. This does not mean we are disabled! Our pancreas doesn’t work right, so we need to assert our rights as people with diabetes and not get caught up in silly labeling.
It is of paramount importance that all children and youth attending a publicly-funded school assert their rights and ensure their wellbeing to the fullest extent of the law as offered by 504 plans and the Americans with Disabilities Act.
I needed a 504 plan at my high school to make sure there would be no questions as to whether I could check my blood sugar during class or give myself an injection/bolus while learning. Just as diabetes should not disrupt your goals, diabetes does not need to interrupt your learning process either!
June 30, 2010
Props go to Roche for hosting a social media summit and inviting the American Diabetes Association (myself included) to participate alongside some of the Internet’s most prominent diabetes bloggers/members of the online community. It seems as though many people perceive the Association as a primarily Type-2 diabetes organization. We began as an organization focused on treating type 1 diabetes and now serve as the largest resource for research, community, advocacy, and etc. on all types of diabetes and for all age groups. Several important topics were raised and pressing questions answered or discussed. A few great points came from this discussion between my fellow ADA members and the bloggers. First, we were asked to push for greater awareness about World Diabetes Day, as the American Diabetes Association is a member of the International Diabetes Federation. By promoting the occasion through broadcasted public service announcements and to our local markets, we can also reach overseas and to other countries for them to follow. I thoroughly believe that a World Diabetes Day could translate into world awareness and turn diabetes into a massive global cause - thus uniting nations against this disease! The issue of disappearing endocrinologists was also raised. No, they are not vanishing into thin air. It seems as though diabetes-specific doctors are actually going out of business due to the low rates of reimbursement and large amount of time dedicated to diabetes education and working with their patients. Scholarships to help fuel medical students into the endocrinology field would be novel in solving this problem. Diabetes research can be extremely hard to understand, especially when it deals with complicated physiological processes and is written up with language on a PhD-level. Several people suggested that we need to translate the results of our diabetes research into language and terms normal, educated people can understand and then feed back into their communities. We need to see the results from our dollars in a way that makes sense to us, not just the scientists working hard in the background. The last major suggestion offered up during the summit concerned the idea of a full diabetes team used to care for diabetes patients. While this typically includes a dietitian, endocrinologist, and various registered nurses or practitioners, the ADA also recommends a team member for the psychosocial aspects of diabetes care as well. Making sure to include a psychologist or person specializing in mental health services will be sure to address issues that may affect those with diabetes- depression, bipolar disorder, anxiety, grief, etc. We must be sure to offer a complete spectrum of care, because we all know diabetes affects more than just our pancreas. Diabetes is a whole-body disease and must be treated with a range of specialists and doctors as a result.
Props go to Roche for hosting a social media summit and inviting the American Diabetes Association (myself included) to participate alongside some of the Internet’s most prominent diabetes bloggers/members of the online community. It seems as though many people perceive the Association as a primarily Type-2 diabetes organization. We began as an organization focused on treating type 1 diabetes and now serve as the largest resource for research, community, advocacy, and etc. on all types of diabetes and for all age groups.
Several important topics were raised and pressing questions answered or discussed. A few great points came from this discussion between my fellow ADA members and the bloggers. First, we were asked to push for greater awareness about World Diabetes Day, as the American Diabetes Association is a member of the International Diabetes Federation. By promoting the occasion through broadcasted public service announcements and to our local markets, we can also reach overseas and to other countries for them to follow. I thoroughly believe that a World Diabetes Day could translate into world awareness and turn diabetes into a massive global cause - thus uniting nations against this disease!
The issue of disappearing endocrinologists was also raised. No, they are not vanishing into thin air. It seems as though diabetes-specific doctors are actually going out of business due to the low rates of reimbursement and large amount of time dedicated to diabetes education and working with their patients. Scholarships to help fuel medical students into the endocrinology field would be novel in solving this problem.
Diabetes research can be extremely hard to understand, especially when it deals with complicated physiological processes and is written up with language on a PhD-level. Several people suggested that we need to translate the results of our diabetes research into language and terms normal, educated people can understand and then feed back into their communities. We need to see the results from our dollars in a way that makes sense to us, not just the scientists working hard in the background.
The last major suggestion offered up during the summit concerned the idea of a full diabetes team used to care for diabetes patients. While this typically includes a dietitian, endocrinologist, and various registered nurses or practitioners, the ADA also recommends a team member for the psychosocial aspects of diabetes care as well. Making sure to include a psychologist or person specializing in mental health services will be sure to address issues that may affect those with diabetes- depression, bipolar disorder, anxiety, grief, etc. We must be sure to offer a complete spectrum of care, because we all know diabetes affects more than just our pancreas. Diabetes is a whole-body disease and must be treated with a range of specialists and doctors as a result.
June 29, 2010
Hey Everyone! It’s my last day here at the American Diabetes Association’s Scientific Sessions! As you can see from my blog, I’ve been busy running around and trying to learn as much as I can.
I stumbled into a late breaking session this morning. The ACCORD study, or Action to Control Cardiovascular Risk in Diabetes, was a large-scale clinical trial which tested treatment approaches to find the best strategies for decreasing the high rate of cardiovascular complications (heart attack, stroke, death) among people with Type 2 diabetes. According to the study, adults with Type 2 diabetes are two to four times more likely to die of heart disease or stroke than those without diabetes. It is saddening to know that 65% of those with Type 2 diabetes eventually die as a result of heart attack or stroke.
The three treatment strategies utilized in the ACCORD study to reduce the risk of these complications were intensive lowering of blood glucose levels, intensive lowering of blood pressure, and treatment of cholesterol with two drugs (a fibrate and a statin). Usually, elevated cholesterol is treated with a statin, a drug that prevents certain enzymes from synthesizing cholesterol in the blood. On the other hand, a fibrate is a drug which prevents the liver from producing triglycerides. With over 10,000 adults participating in the trial between the ages of 40 and 79 and living with diabetes for an average of 10 years, the study focused on individuals who already had risk factors for cardiovascular events such as high blood pressure/cholesterol/blood sugar levels, smoking, or obesity.
Amazingly, intensively lowering blood glucose levels (achieving an A1C of less than 6%) did not result in a reduced incidence of cardiovascular disease! However, on the microvascular level (eyes, kidneys, and nerves), scores in visual sharpness, kidney function, and nerve function were better than those who were treated in the standard group (aiming for an A1C of 7-7.9%). Participants who intensively lowered their blood glucose and treated their cholesterol were shown to have a slower progression of diabetes-related retinopathy than those in the standard treatment group.
Participants treated aggressively to lower their blood pressure did not see a related lowering in their risk for retinopathy. Intensive lowering of blood pressure to levels of less than 120 mm Hg, compared to standard treatment aiming for less than 140 mm Hg, did find a 41% reduction in stroke incidences.
When it came to cholesterol-lowering therapy, men and women responded differently. Although men experienced a 20% reduction in cardiovascular events (only if they had elevated triglyceride levels combined with low “good” (HDL) cholesterol levels), women saw an increase in cardiovascular events! According to scientists though, the women’s study data was not as statistically significant and must be reviewed further.
June 28, 2010- Evening
Hey Everyone! I just attended a session on transition care for young people with type 1 diabetes. This is something that I’m getting ready to experience as I head off to college in the fall.
The transition from child to adult for youth with type 1 diabetes often presents challenges and unique issues. Adulthood is considered the time when someone must accept responsibility for one’s own self, organize one’s educational/social/economic priorities, be receptive to change, and become independent. As young adults assumes a traditional adult role, they are more ready to become an active participant in their disease and follow lifelong patterns of behavior.
Of course, as many young adults head off to college, the top barriers include scheduling and time management, stress, hypoglycemia, diet management constraints, and finances. And we all know that competing life demands and expectations always require a treatment plan tailored to our personal needs!
June 28, 2010- Morning
Hey Everyone! I just finished attending session on translating new research into public health campaigns presented by the National Diabetes Education Program (NDEP). The presenter explained that to prevent type 2 diabetes, a public health campaign must focus on behavioral change- diet and exercise, specifically. The strategies to reduce the instances of type 2 diabetes complications also involve intensive control of the A1c, blood pressure, and lipids. A lifestyle change must also accompany this if the person also wishes to lose weight.
Did you know only 4% of children were overweight in the 1970s? That wasn't very long ago! What has happened since then to lead to the obesity epidemic? Changes in nutrition, physical education, behavior, and social marketing have all transformed our habits. Children are no longer moving all the time. Few kids wait to hear their parents calling them to come inside for dinner after a long day of playing outside with friends in their neighborhoods. Real nutrients in foods have been replaced with hydrolyzed, hydrogenated, fatty oils and substances not found naturally. We know the health of the individual is inseparable from the health of communities- their family, friends, culture, and policy. So, these systems must be targeted for change.
According to the Centers for Disease Control, the largest impact on the health of the individual lies in socioeconomic factors like poverty, education, and housing. Making the individual's go-to decisions into healthy ones involves changes such as the fluoridation of water, removal of trans fat from restaurants, and even tobacco taxation. Next, long-lasting protective interventions must be implemented. These include immunizations, interventions, cessation treatments (smoking, drinking, and other high-risk behaviors), and preventive treatments (colonoscopies, regular physicals, mammograms for females, etc.). Clinical interventions such as prescriptions for high blood pressure, diabetes education, and changes in exercise and dietary habits lastly form the foundation for a permanent positive change.
Have you made any changes to your health behaviors lately?
June 27, 2010- Morning
Imagine an indoor football field with high ceilings and filled with hundreds of temporary structures (some even two-story!) where thousands of medical or diabetes-related company representatives await your conversation. I slipped into the Exhibition Hall as soon as it opened this morning and soon found myself three hours later with only about a third of the total ground covered.
Armed with bags and goodies picked up at tables along the way, my father and I spent time talking with some of the most interesting people involved in developing cutting edge diabetes products and individuals and research. While there are plenty of tables hawking enzymes and antibodies for diabetes research to scientists, many other tables offered up a multitude of products and services, ranging from antimicrobial socks and artificial sweeteners to continuous glucose monitoring devices and free 5-minute A1C tests!
After a brief lunch break, I returned to the large hall and made the rest of my rounds to the various booths. I customized my own diabetes medical posters with a nifty software program, tested out some seriously tasty frozen diabetes-friendly low-sugar shakes, and even petted a cat-sized rabbit! While the rabbit may or may not have been affected by diabetes (you never know; carrots are pretty high glycemic!), I encountered people who reminded me over and over about the benefits of being a part of the “diabetes club.” As one woman put it, “You may not want to join the club, but once you’re in, you’re in…and you love it!”
Every pump similar to the one I have makes my heart flutter as I restrain myself from running up, introducing myself, and complimenting them on the fine machinery by their side.
Truly, I have never before appreciated how global the diabetes pandemic is. I have never seen before so many people from different countries- Indonesia, Ecuador, Belgium, etc.- who all care so much about ending diabetes and opening wide its intricacies in terms of how it affects our anatomy and physiology. Over the past two days alone I have for the first time almost been brought to tears by some of the stories and encounters I have had.
- A young child broke his insulin pump and refused to eat dinner because the shots and checks hurt just too bad for him to bear.
- A mother so excited about the diabetes conferences that she couldn’t wait to introduce us to all of her friends, so that we would feel just as included in the diabetes family as those she has attended with for many years.
- A doctor pleading with me to get through medical school and visit foreign countries like his own, where patients have to wait months, even years, to have a diabetes appointment or even receive proper medical supplies.
Sometimes I think that I understand and appreciate things that I have yet to actually experience. Yet times like these- real life happenings- prove to me over and over again that I have only undergone but a fraction of my life, and cannot even begin to understand all that has yet to unravel before me.
June 26, 2010 — Evening
Hi Everyone! I just returned from a session on the Artifical Pancreas Project. Exciting new technology may be in the near future for those with diabetes which involves two hormones working together to simulate the working human pancreas. The artificial pancreas system, in a recent clinical trial, successfully controlled blood sugars in adults with Type 1 diabetes. All study participants were able to maintain almost-normal blood glucose levels for more than a day at a time without experiencing severe low blood sugar.
This "closed-loop" system, which utilizes insulin and glucagon (to counteract the effects of insulin), combines a continuous glucose monitoring system (CGMS) with one pump for each of the two hormones. These pumps are controlled by an algorithm, or a complex computer program, which calculates the correct amount of each hormone to deliver based on the blood sugar levels given to it by the sensor. Engineers, mathematicians, and diabetes experts are all working together to develop this insulin delivery mechanism which could drastically change the lives of the over 23 million people in America living with diabetes.
This is a seriously amazing stuff! Let us all hope this development will accelerate successfully to the point of FDA-approval, clinical acceptance, and insurance coverage in the very near future! I can only imagine when the day will come where I will have to choose between a plethora of these closed-loop systems, just as I chose my insulin pump!
June 26, 2010 — Morning
I've just returned from the 70th Annual Scientific Sessions Abstract Exhibition. The hall is basically a giant art and science fair hybrid. In a giant room there are rows upon rows of large, colorful posters (abstracts) displaying the results of the latest (and sometimes late-breaking) diabetes-related scientific research.
From the examination of the effects dietary salt intake on insulin resistance to a breakdown of the results of supplemental blueberry powder on glycemic control in Type 2 diabetes, these science easels range from the easily-understood to the kind only PhD-level microbiologists would fully understand. Initially, I thought this 'quick trip to the poster hall' would reveal my general lack of in-depth scientific knowledge. However, upon reaching the "Nutrition" and "Pediatrics" sections of the gallery, I began to pick up information from some of the studies posted.
Luckily, I caught myself an hour later and remembered that these abstracts are also available online. Educate yourself by checking out the Scientific Sessions website!
June 25, 2010- Evening
Hey Everyone! I just finished Day 1 of the American Diabetes Association’s Scientific Sessions. My last session of the day was about the implications of health care reform on the care and prevention of diabetes.
Health care reform expands coverage, first and foremost, for the under-insured. Its requirements include no denial of coverage for pre-existing conditions, no lifetime or unreasonable annual limits on coverage, establishes state health benefit exchanges, sets standards for prevention and wellness benefits, creates a national diabetes prevention program.
Shereen Arent, JD, works for the American Diabetes Association as the Executive Vice President in Government Affairs and Advocacy Division. As a leader in the push for health care reform, she was elated (as were millions of other Americans) when three months and three days ago, the Affordable Care Act was passed into law. Before this, people with diabetes were prevented from getting insurance due to pre-existing conditions, were unable to properly managing their diabetes due to the high costs of medication, and were left with exorbitant premiums based on their chronic illness.
The Affordable Care Act will be enacted in stages, beginning this year. By 2014, no exclusions will be made to those in need of health insurance. Those who need coverage will receive it through the government (Medicare, Medicaid) or private market (individual, insured group, self-insured group). A list of requirements to be covered, called The “Essential Benefits Package” includes diabetes prescriptions, eye care, podiatric services, and other services.
While the health reform bill sounds practically perfect, there are some “sharks,” as Shereen says. For example, while discrimination has ended when it comes to the price of premiums based on pre-existing condition, workplace wellness programs may “swallow” this rule. That is, in an employer-decided workplace wellness program, an employer may determine an increase in health insurance costs simply because an employee does not meet certain guidelines. This can become outrageous as employers have the power to discriminate based on subjective standards.
Lastly, several changes are coming for the Medicare coverage program. There are many new free preventative services, free annual wellness visits and personalized prevention plans, and newly limited out-of-pocket drug costs. Medicare will also act as a laboratory for trying new systems and methods of care administration.
After her presentation, Shereen answered a few questions. The first wondered if there are going to be policies in the future to limit the use of sugary or unhealthy products. Shereen answered that there has been a movement to re-vamp vending machines and remove the high-sugar drinks and fatty foods from them. Currently, the Association has standards for the school lunch, but not what is being sold in the ala carte line or school snack shops. Shereen explained that the Association is focusing particularly on youth and menu labeling so young people know what they are consuming and how it affects them.
I hope you all are enjoying the blog posts! Feel free to comment over on the National Youth Advocate Facebook page!
June 25, 2010- Afternoon
The room was buzzing before the Advocacy in Action session started here at the Community Volunteer Leadership Conference. It’s really great to be around other Diabetes Advocates!
George Huntley, Past Chair of the Board of Directors of the American Diabetes Association, updated the crowd on the newly passed health care reform bill. “Without insurance and before health reform,” he said, “we had a system that would pay for an amputation due to complications from diabetes. Yet we didn’t have a system that made it possible for those with chronic illnesses such as diabetes to even afford insulin.”
The health reform bill promises several important and life-altering things for people like us, living with diabetes:
• People with diabetes cannot be turned down for coverage or have it taken away when they need it most
• Limits will be placed on out-of-pocket costs for all, plus an array of help for low and moderate-income people with diabetes
• New programs will be implemented to prevent diabetes
One thing that I thought was especially interesting was that chain restaurants will be required nationwide to post caloric information on menus and boards. Carbohydrate content and additional information must also be available upon request, which will certainly be helpful for people with diabetes that are counting carbohydrates! Hopefully, this translates into the creation of healthier options from fast food chains and restaurants.
Next, a courageous man named Jeff Kapche told us how he’s dealt with discrimination due to his diabetes. Unbelievably, he was discriminated against not only when he tried to get a job in law enforcement, but then again when he applied to be a Special Agent for the FBI! He was told that even with successful diabetes management, he did not deserve protection from discrimination from the Americans with Disabilities Act! With help from the Association’s volunteer legal “dream team’ including doctors and lawyers, he fought the state and proved to everyone that diabetes is never a reason to give up on your goals. Jeff and his legal team received the 2010 Public Policy Leadership Award during the session. Seriously, what inspiration!
The Safe at School campaign is yet another example of where the American Diabetes Association is hard at work to maintain an atmosphere of safety and fairness for children with diabetes in schools. Because diabetes doesn’t take recess (even though I wish it would!), the Association is committed to making sure very child is medically safe at school and has the same educational opportunities as a child without diabetes!
More to come from Orlando!
June 25, 2010- Morning
Hey Everyone! Amy Johnson, National Youth Advocate, here. I’m in Orlando and super excited to be at the American Diabetes Association’s Community Volunteer Leadership Conference! It’s great to be here with so many of the Association’s passionate volunteers.
The first item on this morning’s agenda was a general session covering the Association’s scientific, medical, and research activities. In a nutshell, the purpose of the Scientific and Medical Division of the Association is to provide support and oversight of the Association’s research funding; standards of diabetes care, screening, and prevention; and legal advocacy/legislative action.
Richard Bergenstal, MD, the President of the Medicine and at the American Diabetes Association, presented several facts and highlights about the Scientific Sessions:
• Sci Sessions is the 17th largest medical meeting in the United States
• 398 speakers have been invited
• Average attendance is 13,000-20,000 people
• The majority of those in attendance are MDs, DOs, RNs, and PhDs
• People come from over 50 countries to attend
Next, Betsy Seaquist, MD, presented information about the Association’s research efforts. The ADA’s Research Division aims chiefly to increase the funding of diabetes research whether it’s through clinical research, community based research or translational studies. Increases in funding support the development of new studies, ideas, and pathways to improve diabetes treatment options and, potentially, find a cure. That’s the ultimate in stopping diabetes! Since 1980, the Association has funded over $500 million in research, with over 4,000 projects!
More posts to come from Orlando!
June 23, 2010
Topeka, Kansas, was my travel destination of the day! Upon arrival at camp, I saw elementary and middle school kids playing around a picnic table where two volunteers were working with paper-mâché on a giant white sphere. I entered the cabin to see dozens of kids and adults engaging in Crazy Hair Day! From a spiky green mohawk on a 7-year old pump-toting boy to a rainbow of colored gel streaks in a young girl’s long curly pigtails, these kids were having some serious fun!
Once some of the activity had slowed down, the children were seated and I was introduced. I first posed the question, “What does a person with diabetes look like?” A young girl’s hand immediately shot up- “Normal!” This was one smart group! That’s right, I told them, and then continued to explain that all kinds of people have diabetes and it doesn't ever mean you look or necessarily act any different. “We are all normal people, and some of us even have purple ponytails!”
Shortly after, there was a unanimous agreement that no one likes to be a human pincushion- no one likes poking their finger, giving a shot, changing a site, or worrying about pain at all! I made a few other points and brought up the local Step Out! Walk to fight diabetes event in Topeka coming soon, and then led off into our Greater Kansas City Executive Director, Mark Stubbs, addressing parents about the American Diabetes Association and further questions about school rights and the Americans with Disabilities Act.
I hope to visit more camps in the near future and post pictures up on Facebook soon.
June 18, 2010
Hey Everyone! Hope that you all are having a great summer! I’m gearing up for 10 days in Orlando, FL and am excited to share just a sneak peek of what I’ll be doing while I’m there. I’ll be attending the Association’s Community Volunteer Leadership Conference and Scientific Sessions, the world's largest diabetes meeting!
I’ll also be attending the Children with Diabetes Friends for Life International Conference from June 29-July 4. Where can you join an international group of clinicians, researchers, physicians, adults, children, and families affected by diabetes to learn the most current information on diabetes care? Between meeting people who conquer diabetes daily, from the first person to climb the highest peak on every continent (Will Cross) to Miss America 1999 (Nicole Johnson), and getting to speak about some of the work I’ve done as the National Youth Advocate, it should be a really great time.
I look forward to sharing with all of you via frequent blog posts, pictures, interviews, and perhaps even some video on the Facebook page!
Stay connected, ask questions, and get involved!
May 25, 2010
Hello advocates! Since my graduation from high school, life has been a whirlwind of exciting changes and new journeys. Just a few days ago, I embarked on the most action-packed and rewarding experience to date as the NYA- I ventured to California to the home of Danny DeVito and Rhea Perlman to “Rock for Diabetes,” a benefit concert for the Children’s Hospital of Los Angeles, played by the Jonas Brothers!
The youngest Jonas musician, Nick, has type 1 diabetes and is not shy about spreading the word to make people aware of the importance of taking care of yourself and living life to the fullest.
I spent the evening bouncing around among celebrities and music fans in Los Angeles who are dedicated to improving the lives of others, like the patients of the Children’s Hospital, many of whom are affected by diabetes. During the course of the night, I met and interviewed several people including Dr. Francine Kaufman- Past President of the American Diabetes Association and one of the most passionate endocrinologists I have ever had the privilege to speak with- Danny DeVito, Rhea Perlman, opening musician Amanda Lamb (also has type 1 diabetes), and of course the Jonas Brothers!
Before playing a few of their songs, both Amanda and Nick paused to speak with the audience and offer a more intimate look at their own struggles with diabetes and the fight to overcome the obstacles associated with it.
Amanda described her life with diabetes as the job of an “aerialist”- also the name of one of her songs- which is to balance on a tight rope. Life with diabetes is a difficult balancing act. Our body, so highly variable and finely tuned, is often hard to control manually as we must do when monitoring our blood sugar. Sometimes we get high blood sugars, and other times frustrating lows, which sometimes remove us from the fun and activities we would rather be enjoying.
Yet, in the midst of this, we realize that if people like Nick Jonas and Amanda Lamb can find balance and still be wildly successful, we can follow our goals and blast through any walls life places in our path, too!
Diabetes does not have to put any limits on your life.
March 16, 2010
This past weekend I attended the bi-annual National Committee Meetings in Washington, D. C. I attended both the Advocacy Committee and Youth Strategies Committee meetings throughout the day, and was pleased to see how passionate everyone was about making the lives of all those affected by diabetes better in every way. The meetings were a melting pot of ideas and strategies from across the country.
Sitting at the U-shaped tables in the meeting areas made me feel as though I was sitting among a group of "diabetes titans", who are not only highly involved in changing the landscape of this disease on a national scale, but are role models for everyone in their community as advocates, volunteers, and people affected by diabetes.
Much of the discussion in the Advocacy meeting concerned how to go about more efficiently teaching advocates how to bring about positive changes in their community. We concluded that advocacy is not necessarily “learned” best by jumping in head-first and immediately trying to meet with legislators or lobby for certain bills. Rather, we should focus on building self-advocacy skills first to develop confidence which will allow advocates to do even bigger and better things!
January 13, 2010
I attended the Greater Kansas City ADA Leadership Board meeting today. This was my first opportunity to present myself as the 2010 National Youth Advocate, as well as lay out an initial foundation for my goals and duties to my fellow board members. Taking stock of our proposed event goals and financial strategies, we band together and continue networking and arranging meetings to garner support.
January 25, 2010
Today I met with Tom Bowser, President and CEO of Blue Cross/Blue Shield Kansas City, as well as a few members of his staff regarding future continued support for American Diabetes Association events and programs, such as the Tour de Cure or Step Out: Walk to Fight Diabetes.
Tom asked some great questions that provoked deeper thinking on my part. “Other than raising money, what do you tell kids to do to help the American Diabetes Association?” particularly stuck out to me.
We Can Do More
While I did answer the question, immediately after I left I began brainstorming even more. I realized that youth in general can do many things for the Association to help the fight against diabetes, and to help themselves! Several broad categories include:
- Educate yourself. The more you know, the better you will field questions related to your diabetes. The higher quality of information you have equals improved treatment on your behalf.
- Volunteer anywhere. A volunteer performs a service willingly and without payment. This leaves millions of opportunities for you to help out! You can do anything from making diabetes alert bracelets to cooking up healthy meals to raising money and donating it to the Association.
- Take action. You are never too young or too small to make beneficial changes in your community. Grassroots energy is where everything begins! Become involved with your local government:
- Get your student council to host a diabetes event
- Contact your local representative and tell him or her about the latest issue relevant to the diabetes community
- Interview people about issues or bills in order to make that positive change happen.
February 25, 2010
Wow! I could not be more proud of the new campaign rolled out by First Lady Michelle Obama in early February, calling for an end to childhood obesity through improved nutrition and exercise. A few points immediately stand out to me:
- This campaign targets you and me — the youth of America. It recognizes that we are the future of America, and our health matters both now and in the future. Thus, we are treating the “root” of the problem of obesity (which can lead, unfortunately, to type 2 diabetes) and nipping it before it becomes worse into adulthood.
- Even though this campaign is specifically against childhood obesity, this is very helpful to the mission of the American Diabetes Association because it acknowledges that poor nutrition and exercise may lead to diabetes.
More Children Getting Type 2
This also highlights the unfortunate rise in the instances of type 2 diabetes among youth. Not long ago, type 2 diabetes was called “Adult-Onset diabetes” because it appeared to affect almost entirely adults. Today, with the rise in unhealthful habits in America, it’s predicted that nearly 1 in 3 children born after the year 2000 is at risk of developing type 2 diabetes (1 in 2 in minority populations) if current trends continue!
It seems as though everyone knows someone affected by diabetes. I work at a local gym (or a “fitness resort” for fancier types) in the protein shake shop. My duties consist of making yummy protein desserts and talking to folks about health and nutrition! While I’m not sure anything could be more “up my alley,” there have been an overwhelming number of clients who are grossly misinformed about nutritional guidelines, the cause and treatment for diabetes, or both.
Many clients, upon pointing out the insulin pump I proudly wear as my life partner at my side, proceed to spout out the most interesting theories about diabetes. “So, are you sure you need the insulin? I mean, you’re not fat!”
Another common stigma is that I cannot have any starches, sugars, or even fats. Although it is a bit amusing to hear these diabetes notions, I am eager to clear them up and distinguish between the two main types of diabetes and what exactly they entail. More often than not, the client leaves as a more well-informed advocate for their own health (armed now with correct information), and I end up with a tip or two myself! Education and awareness have only positive benefits.
Learn to Read Labels
A few customers seem to follow their own (albeit very comforting to them) ideas about nutrition, especially in terms of calories and sugar. Theywreck a decent workout by treating themselves to a high-calorie protein shake simply because the label sounds healthy or sends a positive connotation to their dieting minds.
Learning how to read nutritional information on food labels is extremely important for everyone, especially for those of us with misbehaving pancreata!
Positive Changes You Can Work On:
- We should help pass the Child Nutrition Reauthorization this year. This bill, according to ADA’s website, “will strengthen nutrition policies in our schools, including food sold in vending machines and a la carte lines, and require schools to improve implementation of their local wellness policies.” By passing this bill, we can help the American Diabetes Association support the Childhood Obesity campaign and improve the health of kids like ourselves, in turn lowering our risk for developing type 2 diabetes! Visit here to Urge Congress to Make Child Nutrition a Priority.
- On the exercise front, we should support the FIT Kids Act. This will encourage public schools to offer physical education classes and require them to report on the results.
February 27, 2010
Tonight was the 4th annual American Diabetes Association Kansas City Hoops and Sneakers Gala! More than 500 people RSVP'd for the live and silent auctions, dinner, awards, dancing, and the chance to meet lots of sports celebrities! Of course, I enjoyed the opportunity to dress up with my hoop earrings and address the crowd to let them know about my role as the 2010 National Youth Advocate.
The event was a great success, and I’m sure this will be verified when the numbers come together at the next board meeting of our Association chapter.
Question of the Day
Of the diabetes events you attend, which is your favorite and why?
You can post your answers up on the and view others' answers, as well. Perhaps you will find a new idea for an event in your community, too!
February 12, 2010
I have just returned from the ADA headquarters in Alexandria, Virginia, where I was briefed over the many different aspects of the Association’s branches (federal and state government affairs, youth initiatives, legal advocacy, etc.) and how my role would begin to fit into them. Aside from shaking many a hand and collecting numerous business cards, I am very thankful for all of the reading material I received so I can have plenty of information to refer back to in the near future!
I met people like Gary Gross, the new legal advocacy director who shared several stories regarding recent victories for people with diabetes over everything from workplace discrimination (see Kapche vs. FBI) to battles for our right to self-manage diabetes in school. I also spent a day on ‘the Hill’ talking with legislative staff from both the Senate and House sides in order to familiarize myself with them and begin to form working relationships on which I can build in the future. It is these working partnerships which will allow the ADA and me to further our goals in keeping legislators fighting for what the public needs- diabetes prevention and research to improve our quality of life and cut costs both now and in the future!
An interesting quote that stood out to me during my orientation came from Meghan Kissell, ADA headquarters staff member, “Amy, you’ve got people.” Even though she was referring to my new ‘points-of-contact’ as the National Youth Advocate, this line is highly applicable to all of us with diabetes. We *do* have people! We have people everywhere- almost 24 million of them, actually. While it is never nice to see how many millions of Americans have diabetes, it is comforting to know that there are people all around us sharing similar obstacles and struggling to overcome them every day just as we do.
A pressing issue which caught my attention was menu labeling. I know the ADA has been working hard with restaurant chains in order to mandate posting nutritional information (or at least having it available upon request) where the public can view it. However, it still frustrates me to see a huge lack of nutritional information where it should be posted the most- airports, cafeterias, and schools! As a matter of fact, this disappointed me so much traveling home through the D.C. and Kansas City airports that I am now formulating a strategy to get menu labeling first on a small scale in my school. If this is successful, I hope to spread it across my school district and perhaps lobby for menu information to be posted at more cafeterias across the area. I encourage anyone to do the same- all it takes is a few questions and a bit of courage!
Positive Changes You Can Work On
- It really helps to connect with ‘your people’- others like you with diabetes, be it through forums or even Facebook! Speaking of Facebook, you should definitely check out the NYA page.
- Ask around your school/workplace/etc. about menu labels. Is there nutritional information available? If so, why isn’t it posted for the public to see?
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