The Florida Suncoast Chapter of the Juvenile Diabetes Research Foundation continues to reach out to newly diagnosed families of Type 1 diabetes through many outreach programs.
Outreach Coordinator Cynthia Kemp for the Florida Suncoast Chapter of the Juvenile Diabetes Research Foundation said in addition to the teen mentoring program they began at the beginning of the year, they also are in the process of creating an adult mentoring program for newly diagnosed families.
Daisy Alvarado, a Lehigh Acres resident, said she became involved in the mentoring program six months ago because her family was touched by juvenile diabetes. She said her family has had to make quite an adjustment since her daughter was diagnosed, especially with food intake on a daily basis.
Alvarado said her daughter, who is now 10, was diagnosed almost four years ago with Type 1 Diabetes.
“She is doing very well,” Alvarado said. “She is very positive, she has coped with it very well.”
Since becoming an active mentor in the program, Alvarado said it has had a very positive impact on her daughter as well.
Type 1 Diabetes, an auto-immune disease, occurs when an individual’s pancreas stops producing the insulin that is needed to control blood sugar levels. This type usually occurs in childhood, adolescence or young adulthood. Those diagnosed with Type 1 Diabetes must take multiple injections of insulin a day to survive.
One in every 400 children and adolescents have Type 1 Diabetes.
Since diabetes affects families in different ways, the mentoring program plays a crucial role in helping them find answers to their questions.
The mentoring program is great because it gives her the opportunity to reach out to people who are going through the same thing she went through when her daughter was diagnosed, Alvarado said.
“I am provided with the information for new families, especially the bilingual community, having gone through this myself and still going through this, there are always new things to look out for and you never stop learning,” she said.
Since she became involved in the mentoring program six months ago she has worked with seven families. Although it varies on how many times Alvarado talks with the families, she said, on average, she has held conversations with them two or three times since she was given their names.
The mentoring program draws people in because it helps families receive answers to all of their questions on where to go and what to do.
“They can come out of their shell and be able to reach out,” she said.
Kemp said the No. 1 thing that families ask for from the foundation is to keep them updated with what is happening in research.
“They know what it is like to live every day with the disease,” she said.
To answer their request, Kemp said they are hoping to connect with the University of Florida to provide a monthly speaker series about the disease, along with research forums.
Kemp said another resource they offer to their families is the Clinical Trials Connection, which simplifies the process of finding clinical trials that may be of interest to them or to their family members.
“Free screenings for relatives of type 1 diabetics are available through TrialNet, a JDRF funded research study across several countries,” she said.
In addition, the foundation also provides a “Bag of Hope” to newly diagnosed families, which is a backpack that has a variety of resources, along with a free Aviva compact blood meter. Kemp said the bag also includes Rufus the Bear, who has patches all over him to show the kids where they can do their insulin injections.
“The bag of hope is really a good resource to introduce to new families,” Kemp said.
Another portion of their outreach program is the website juvenation.org, which allows Type 1 diabetics and their families to connect. Kemp said the website is equivalent to Facebook.
Alvarado said the Juvenile Diabetes Research Foundation has been great to her and her family. She stumbled upon the organization through her daughter’s physician and research she did online.
“They have all been very supportive,” she said about their continuous help when she reaches out about twice a month. “They have helped me 100 percent.”
The foundation provides her with education as far as the unknown questions and answers she might have. She said everything is brought down to the basics, which provides an opportunity to understand what to expect.
The Juvenile Diabetes Research Foundation and American Diabetes Association will hold a “Taking Diabetes to School” event on July 31 from noon -3 p.m. at Lakes Park shelter D-1.
Kemp said the event will provide families with education about Type 1 Diabetes, along with social time to mingle with other families.
“This is really a very valuable event for our families,” she said.
The event will include games and activities for the children and information for parents.
The head nurse from the Lee County School District will share information about federal and state laws that protect children with diabetes, what to expect from the school administration of their child’s school, along with what snacks and lunches they can eat.
Kemp said although the event is free to attend, she is asking everyone to bring something for the pot luck dinner that will be held during the event.
The Florida Suncoast Chapter of the Juvenile Diabetes Research Foundation was formed in 1994 and currently covers 10 counties from Manatee to Collier and east to Lake Okeechobee.
For information visit www.jdrf.org/index.cfm?page_id=100555 or call 239-992-3840.