Teams needed for JDRF golf outing

NEW NORMAL

When I was at the hospital my mom had to pick up supplies to take home for when I was discharged. We went to the pharmacy and the pharmacist told us that my mom would have to pay $600 for all of the supplies. She was shocked when the pharmacist said: ‘These supplies will last you about a month.’ This was not something that my parents could have ever prepared for, but sadly it happens to families all over the world.”

Lucy Arevalo, Type 1 Diabetic

FORT MADISON – For the first time ever, a local group is putting together a golf outing for juvenile diabetes.
The group, spearheaded by Allison Arevalo, has set July 27 at Sheaffer Memorial Golf Course as the spot for the “Swing for the Cure” a four-person best shot for JDRF.
Teams are still being accepted for the event and can be done so by calling Arevalo at 319-470-5167 or Chuck Vandenberg at 319-371-1670. A team of four is $400 and slots are still available as are sponsorships.
Arevalo said she wanted to get the tournament going because so many of Lee County residents count on JDRF to help their loved ones, including her daughter Lucy.
“We love supporting JDRF because they support Type 1 diabetics and their families in so many ways,” she said. 
“They help support T1D families by hosting events and connecting newly diagnosed families with advocates, and help send Type 1 diabetic children back to school. But most importantly, they fund research that prevents, treats, and will someday cure, Type 1 Diabetes. All of Lucy's lifesaving technology is a direct result of research funded by JDRF.”
Arevalo said there are many new and exciting developments on the horizon, including treatments to delay the onset of Type 1 Diabetes and eliminating the need for insulin injections. JDRF is the organization funding and advocating for those trials and research.
The golf outing has been something she has been thinking about for years. The last event in the area that was specifically geared to JDRF funding was a 5K run that was put on in Burlington. Arevalo said her goal is to raise $10,000 as well as awareness for the disease and its impact on local families
She and Lucy recently spoke at the Fort Madison Rotary club. Lucy shared an essay she had written about her diagnosis as a child. 
“As I think back, being diagnosed with Type 1 Diabetes was the most pivotal point in my life. While I was only six years old, it changed my life in many ways, and has made my life much more difficult. No one chooses to get it, as it is autoimmune. The supplies and insulin that are required to keep me alive are so expensive that they have caused my family to struggle,” she said.
“When I was at the hospital, my mom had to pick up supplies to take home for when I was discharged. We went to the pharmacy and the pharmacist told us that my mom would have to pay $600 for all of the supplies. She was shocked when the pharmacist said: ‘These supplies will last you about a month.’ This was not something that my parents could have ever prepared for, but sadly it happens to families all over the world.”
Lucy said she was lucky in that her family’s health insurance benefits improved and cover most of the diabetes' expenses. She’s now 17 and, in the 11 years of her battle with the disease, one thing that stands out to her is how many people are not able to afford the necessities that come with being a diabetic.
“I have a pump that delivers insulin to me automatically, and a continuous glucose monitor that keeps track of my blood sugar at all times, which improves my life greatly and makes having Diabetes a little bit easier,” she said.
“Many of my friends want to be able to use an insulin pump but cannot, so they have to continue using shots without a continuous glucose monitor.  If you can’t consistently monitor your blood sugar with a CGM, you have to constantly prick your finger to check your blood sugar. How fortunate your family is ultimately determines if you will be able to afford the things you need or not. This is not fair at all.”
She said her involvement with JDRF has allowed her to advocate for others who are not as fortunate as she feels she is.
“JDRF is an amazing organization that works to make life better for Type 1 diabetics while researching a cure. My family has been involved with the organization since I was diagnosed. We have helped fundraise by participating in the southeast Iowa JDRF 5K, as well as the Cedar Rapids 1 walk. My mom is a JDRF advocate who reaches out to newly diagnosed families.”
Lucy was selected last summer to travel to Washington D.C. as part of the JDRF Children’s Congress. She was one of two people picked from Iowa and she was able to speak with area senators and representatives.
“I discussed how important it is to lower insulin prices so that people can get it when they need it, as many are not able to, leading them to have to ration it. I also asked each member of Congress that I spoke with to renew the SDP (the Special Diabetes Program),” she said.
“If it is not renewed, diabetics cannot continuously get new technology to make the disease easier on them, and research will not be able to continue as it is now, which can lead to a cure.
JDRF allowed me to give these members a face behind the disease.”
Arevalo started using her pump about six months after her diagnosis. At the time, it was one of the first of its kind and included the continuous glucose monitor. The pump communicates with the monitor to keep blood sugar levels more consistent and alerts the individual to highs and lows. The device shuts off insulin if blood sugars get dangerously low. Insulin is what the pancreas typically produces to allow the body to use the sugar in the blood stream. In people with Diabetes, the pancreas become less effective and insulin has to be introduced manually.
The device gave her family back a little peace of mind.
“My parents and I could finally sleep at night again and we knew I would be healthier long term because my blood sugars fluctuated less,” she said.
“In 2018, I received a newer model of the same insulin pump system. This version had less false alarms and a more accurate reading of my approximate blood sugar. It made life a little bit easier.”
Newer systems allow parents to monitor blood sugars from their phone and they require little to no more finger sticks, which is how many diabetes patients have to track their blood sugar.
She said helping raise funds through JDRF is what makes life better for millions of people, including many local children and adults.
“Over just the last 10 years, the advances we have made are astounding. It’s made possible by people like you and me.  Because when we donate and fundraise for JDRF, we are funding the research that makes life better for myself and the millions of other people living with this disease,” she said.
“You might be thinking – those insulin pumps and new diabetes treatments sound awesome! They ARE awesome! You might even say they are so good that they are just as good as having a fully functioning pancreas!! But you would be wrong about that.
These new devices and treatments make life better right now, but, even with the best technology, we still have high highs and low lows. We still have awful sick days and frequent hospital visits. Moms and Dads still worry about the effects of the disease on their children long and short term.
"We won’t be satisfied until there is a cure. And that is why we are hosting a golf outing to benefit JDRF at Sheaffer Golf Course.”
To date the following local businesses have joined to support the inaugural event as corporate sponsors: Country Treasures; Dr. Brent Woodbury Orthopedics, Fort Madison; Shearer’s Foods; and Connection Bank.
Type 1 Sponsors include: Great River Health and Pen City Current.
The event hole sponsors include: Rev Fitness; Jacobs Contracting; River City Motors; Holganix; Samantha Louck Realtor; Birkwood Village of Fort Madison; Fort Madison Family Dentistry - Dr. Mark Pothitakis; Clear View Vision Center; Fareway; Pool 19 Plants and Records; Hope Associates Real Estate; Thacher Tree Care; and Latin American Club - LULAC 304.
Chuck Vandenberg is co-owner of Pen City Current, one of the sponsors and the father of a child that had Type 1 Diabetes, said this event is set up for a fun and quick afternoon of golf. But is a much-needed advocacy effort for southeast Iowa.
“This is the first year of this event, and we would like to make it an annual event. But we need golfers to come out and have a great afternoon. We’ll have some fun games on the course, introduce people to some local Type 1 people, and hopefully share some information with you about the impacts of this disease locally,” he said.
Vandenberg has also worked with governmental officials on maintaining advocacy at the national level and said these events are more critical than ever as the researchers get closer and closer to a cure.
“According to the National Institute of Health, prior to the JDRF-funded closed loop system, which is the pump and CGM, the average Type 1 Diabetes patient gave themselves 65,000 injections in an average lifetime. Type 1 usually strikes at a young age and their lifespan is cut, on average, by 12 years compared to those without Type 1,” he said.
“On average Type 1 Diabetes patients spend about $2,500 per year out-of-pocket and diabetes overall has a $400 billion annual impact on the American healthcare system. These events help us get close to reducing that burden, and provide a way for local families to connect in that fight.”
The event starts at 10 a.m. on Saturday, July 27 at Sheaffer Memorial Golf Course in Fort Madison. Sponsorships are still available as well at different levels with $1,000 corporate sponsorships, $500 Type 1 Sponsors, and $150 hole sponsors. Corporate and Type 1 sponsors each come with a team in the event.