2012 Annual Meeting

On August 24^th through the 26^th, HoII orchestrated its largest educational event of the year, the 2012 Annual Meeting. Our staff spends months planning this weekend full of education, support, and appreciation for those who allow us to continue to fulfill our mission. This year’s Annual Meeting was a record breaker! We had almost 250 members in attendance, making it the largest turnout ever for an Annual Meeting. For many of these members it was their very first Annual Meeting, showing how we will continue to grow and reach more of the bleeding disorder community right here in Indiana.

Friday night began with the Industry Appreciation Dinner, where we thanked all of our industry donors for their sponsorships throughout the year. We also showed a short film documenting HoII and it’s success since the 2011 Annual Meeting. This film can be found on the HoII Youtube page (link at the bottom of this page). Friday night also consisted of a luau for those members who we invited to stay the night as they lived too far away for an early Saturday morning drive to Indianapolis.

We officially began the conference on Saturday morning. Our Executive Director Scott Ehnes gave a wonderful update of HoII and the many things the organization has done and is continuing to work on. Following Scott’s presentation, Dr. Amy Shapiro from the IHTC informed those in attendance of some of the happenings with the treatment center. She made sure to highlight all of the incredible services they offer, some of which are completely unique to the IHTC and not found in any other treatment center in the country. The Saturday General Session ended with Dr. Anne Greist, Chris Roberson, Jennifer Maahs R.N., and Dr. Festus Njuguna giving an update on the IHTC Kenya Program (for more about this program contact the IHTC).

Our Annual Meetings main focus is education. We bring in expert speakers from all over the country to give detailed and informative sessions on a variety of topics. Saturday’s breakout sessions included topics such as “Parenting on the Same Page” and “The Power to Take Control.” We encourage families to split up, attend as many sessions as they can, then reconvene and discuss all they learned.

On Saturday evening we focused on celebrating our members. We recognized and presented awards to several members and organizations for all their contributions to the foundation, but more importantly the bleeding disorder community. First we recognized the winners of Camp Brave Eagle Awards. They were Zach Crabtree, Colton Thomas, Hanna Alquezada, and Dallas Alquezada. With the 2012 Walk only weeks away, we took the time to honor the awards from the 2011 Walk. For most money raised, the first place team was the Jacker Backers ($6,005) and the second place team was Team Tyler ($4,610). The team with the award for most members was Bleeding Hearts Blake (47 members).  The final awards of the night are extremely important to HoII as they have provided incredible support throughout the entire year. The winners of these awards are as follows

·      Distinguished Individual Volunteer: Carla Glodowski

·      Distinguished Business or Organization: Tharp Investments

·      Distinguished Group or Organization: Indiana Knights of Columbus

Saturday was a long and tiresome day.  We had several other sessions to conclude with on Sunday; however, Saturday was a time of celebration. We brought in Radio Disney to accompany the Ice Cream Social. The families were able to relax and truly connect with one another, sharing the things they learned throughout the day.

Sunday marked the final day of Annual Meeting. We began with an incredible discussion titled “Health Reform Update/How to be a Good Consumer” from Michelle Rice of NHF. After the morning General Session we had one more round of breakout sessions. These included “Blood Brotherhood,” “First Step – Mothers,” and “Spanish Facts First.” Regardless of their background, every one of our members walked away from this weekend learning something new about the bleeding disorder community. We want to thank Baxter and the IHTC as our title sponsors, and we also want to thank the Crowne Plaza at the Airport for hosting our convention and providing us with wonderful meals. Finally we thank all of our members for attending. We are proud to have such active and participating members! As always make sure to visit our website for continually updated information, and like us on Facebook and follow us on Twitter @HemoIndy. This year we were tweeting live from the meeting, and we do so often from many of our events, so follow to stay informed!

Teen Camp 2012!

Being a leader is something society constantly stresses to teenagers as they grow up; however, most of these teens just hear the words but rarely receive the teachings to do so. Doug Thompson, a former employee of Hemophilia of Indiana, believed it was critical to tap into the potential that all teens have to be leaders. Doug worked to help teens develop and achieve their goals, as well as realize their dreams and ambitions. Doug was not only just an inspiration to the bleeding disorder community, but to society as whole. HoII founded the Doug Thompson Teen Leadership Camp (DTTLC) to continue his legacy and help teens become the future leader’s society needs!

This year’s DTTLC occurred July 14^th-17^th in Oak Hill, West Virginia at the Ace Adventure Resort. We had eleven teens from all over the state attend this year, and it was a tremendous success! This was the third time the DTTLC has been at Ace. After a grueling six-hour drive through rain and curving, mountain roads we arrived at Ace and set up in our cabins. In addition to the eleven teens, the adult chaperones included staff from HoII, the IHTC, and volunteers from the HoII community. Each night the chaperones conducted educational activities for the teens, focusing on decision-making, choices, and overall leadership skills. During the day we took advantage of all Ace Adventure Resort had to offer! Sunday was spent white water rafting down the Lower New River. The river was the best it had been at all year, and made for some pretty exciting rapids! We also had the opportunity to do some swimming in the river, and go through some mild rapids on just our backs! It was a long day, but the campers enjoyed every minute of it. The next day we had the opportunity to go on a three hour long zip line canopy tour of the mountains surrounding the resort. The beauty of this area is absolutely breathtaking! Ace provided an absolutely wonderful resort for us to hold camp and we cannot thank them enough for their hospitality. Even though camp may be over, the knowledge these teens will bring back with them will prove to be everlasting. We are excited to see how these young men will grasp their future and make the right decisions allowing them to achieve great success!

We would like to take the time to thank all those who made the 2012 DTTLC possible, because without these sponsors our teens would not have the chance to develop into the leaders of tomorrow! HoII would like to thank the following: Indiana Hemophilia and Thrombosis Center, Baxter, Novo Nordisk, Cascade Hemophilia Consortium, Community Foundation of Muncie and Delaware County, Kendrick Foundation, Howard County Community Foundation, and the Ronald McDonald House Foundation!

 

Camp Brave Eagle

Every year Hemophilia of Indiana (HoII), in collaboration with the Indiana Hemophilia and Thrombosis Center (IHTC), hold a summer camp for children throughout the state with bleeding disorders. Last week was no exception, as we took 80 children ages 7-16 to Camp Brave Eagle, as we allow our children to soar into new opportunities and discover things about themselves they may have not known before. The camp is held at the YMCA Camp Crosley, located in North Webster, Indiana. We have held Camp Brave Eagle at this location for many years now, and cannot thank the staff enough for all they have done to make sure our children stay safe, while at the same time creating a fun yet educational atmosphere.

            In addition to using the Camp Crosley staff, we bring an entire “army” of volunteers and staff from the IHTC and HoII. The nurses, doctors, social workers, and young adult volunteers allow for children with bleeding disorders to still have a true summer camp experience. Every camper has a different experience, but all agree on one thing, and that is that camp changes them for the better. For some of the younger children, they learn to infuse on their own! Many of the older children and teenagers credit Camp Brave Eagle as being the place they learned to infuse. Below are some testimonials from a few of the children and staff about their time this past week at camp…

“It was fun, I liked making new friends “ – Austin Moffit

“Camp is just another part of my summer routine, it is always a great time” – Jacob Higginbotham

“This was my first time going to Camp Brave Eagle, and it was absolutely incredible. These children and teenagers are unable to attend other camps because of their bleeding disorders. Each and every one of them is an inspiration” – Gavin Freeman, Community Outreach Coordinator; Hemophilia of Indiana.

            Camp Brave Eagle 2012 was an absolute success. From everyone at HoII and the IHTC, we would like to thank those involved and the sponsors who allowed our young patients attend and have the absolute time of their lives!

Dedicated to Making a Difference

Someone once wisely observed that success and fulfillment in life was principally achieved by just showing up.  Never much of a people-person, I had generally avoided showing up at very much of anything over the course of my life.  Perhaps that was due in some measure to having been born with severe hemophilia A in 1965.  I had grown up in a rural area with no local hemophilia treatment center, no summer camps, and perhaps most notably, no factor concentrates.  Years of repeated knee hemorrhages had often resulted in days spent inside reading or studying music.  Limping my way through childhood often resulted in the inevitable teasing from other kids.  “If I cut you, will you bleed?” was a common refrain.  I learned to avoid situations where I would have to talk about my bleeding disorder and began to prefer my own company or the company of my family.In 1985, AIDS entered our lives.  I was tested with my brother and brother-in-law as were thousands of other hemophiliacs.  After being advised that the risk of AIDS was “minimal,” we had continued using factor concentrates and each of us tested positive for what was then referred to as HTLV III, later renamed HIV.  Pat, my brother-in law, was gone by 1990.  AIDS was never mentioned at his funeral.  My brother, John, survived a paralyzing stroke in the same year as his HIV diagnosis. When hearing the news from the man in the white lab coat that “you’ll probably die within three years,” what does one do at the age of 19?  At a time when most are planning their careers and looking forward to marriage and a family, I found myself asking some very difficult questions.  What would I do with whatever time I had remaining?  Who would care about someone like me with a dreaded and lethal disease?  Did I even want to live in a world that sometimes treated AIDS victims by terminating them from their jobs, firebombing their homes and denying them medical care in hospitals?  There were many questions and no answers. Like many others, I simply made the best of things and prayed that a cure would be found.  I pursued a career in music as a trombonist, which eventually led to some national tours with Broadway shows and the Tommy Dorsey Orchestra.  I had the opportunity to perform with Bob Hope, Perry Como, Rosemary Clooney and many others.  I eventually left the music business, as health insurance is a little hard to come by when playing the trombone for a living.  At the age of 30, still surviving HIV and hepatitis C, I decided to settle down and get a day-job. Although society’s attitudes toward AIDS and those living with HIV began to slowly change over the years, I still found it very difficult to confide my medical history to anyone.  In a 25-year period of time I told no more than a dozen people about my HIV status. However, things changed dramatically for me in 2007.  My brother passed away.  He lived a courageous life until liver failure from hepatitis C took him from us in 2007.  Other than a friend in California, my brother was the only other person with hemophilia in my life. During the time that my brother was still in the hospital, I began Interferon treatment for hepatitis C.  I did not respond to my initial treatment attempt and for the second time in my life, doctors told me that without a liver transplant, I would not live much longer. My experiences in 2007 resulted in many changes in my life.  I began to show up.  I resolved that whatever the outcome, I would not depart this world quietly…

Barry Haarde 

Haarde, B. (2010). Dedicated to Making a Difference. Matrix Health News, 5(4), 13-14. Retrieved from http://www.matrixhealthgroup.com/NFall2010.pdf

World Hemophilia Day 2012

Hemophilia of Indiana had the wonderful pleasure of hosting a World Hemophilia Day event in Elkhart, Indiana on Tuesday April 17th. We could not have asked for a better night! We want to first thank all the members of the organization for coming out to celebrate this day of awareness with us. The turnout was above and beyond what we could have hoped for. We are so excited to continue having events in that part of the state. Next we want to thank William Black and Baxter for sponsoring the event. It would not have been the same without such great support! Also we would like to thank Antonio's Italian Restaurant for providing a location for our event, as well as a delicious meal.

At the event, nurse Lisa Bowman, from Indiana Hemophilia and Thrombosis Center, presented a Fact's First program. This program, "Emergencies Happen," educated those about safety when it came to taking a trip to the emergency room, and also safety precautions those with bleeding disorders should take on vacations or day trips. The presentation was outstanding, and each person in attendance definitely took away something they did not know before. Thank you Lisa for your time and informative talk!

World Hemophilia Day only comes around once a year; however, we cannot let that be an excuse for us to stop raising awareness. As advocates for this disease, we must continually educate those in our community about bleeding disorders. Many are unaware of what bleeding disorders even are, including some of the doctors you may see in the ER. We will continue to fight to help those in the bleeding disorder community and we will find a cure, but we ask for your help to do so. 

Again thank you to everyone at Baxter and Antonio's for helping put on the event. Thank you to Lisa for providing wonderful information. Finally thank you again to all those who came. We look forward to seeing you all as we continue to have more programs in Northern Indiana.

100 Frames for a Cure

In honor of Hemophilia Awareness Month, Hemophilia of Indiana held its 2nd Annual “100 Frames for a Cure” Bowling Marathon, on Sunday, March 25 at Royal Pin Woodland Bowl.

Similar to a walk-a-thon, this 100 Frames of Bowling Marathon –     features sponsors who donate money per bowling frame played. For example .25 per frame equals $25.

Last year, we had 7 teams participate, raising almost $8,000. This year we had 12 teams, with over 40 participants, raising almost $25,000!

Proceeds will go to HoII’s Project Lifeline, which helps over 1,200 people and families throughout Indiana, who are impacted by bleeding   disorders.

A big THANK YOU to our sponsors, donors, and participants, who helped make this event a HUGE success!

It's in the Blood by Vanessa Flora

I remember the first time I heard about hemophilia.  I was 6 years old and my little brother was born.  I had to hold him under a pillow because he was “fragile.”  My little brother was a “bleeder”.  All I knew was that I had to be extra careful with him.

When my brother was born, my mother learned that the generation-old family rumor about a “problem with the blood” with the boys in our family was true.  Looking at our family tree, we knew many little boys did not live past toddler years, including my mom’s own brother.  But no one talked about it.   When my newborn brother’s routine heel stick was oozing for hours afterwards and the diagnosis came, our family secret was out.

Growing up the big sister, I treated my little brother like any sibling would.  Yes, we played.  Yes, we fought.  Yes, we did things that we knew our parents would never approve of like roller skating, climbing trees, and being dare devils.  My brother just happened to get medicine in his arm or hand a few days a week and wore padding until elementary school.  I never thought we were different.

When I was 12, the realization that I too was a bleeder hit home when I had my tonsils taken out.  My best friend in elementary school had hers taken out first, and she got lots of ice cream and was back in school in no time.  “It was easy!” she said.  But when it was my turn for a tonsillectomy, I came out of surgery and kept BLEEDING.  It didn’t stop.  I went back twice to the hospital and it still didn’t stop.  I was scared.  The doctor told my mom that it wasn’t possible “for girls to get it.”  My mom fought back.  She fought to get me factor so that I would stop bleeding.  I now understood why my mom fought so hard to advocate for us kids in a time of fear and misunderstanding in the late 1980s.  There were lots of uncomfortable questions for my young mind - Would I get sick like all other kids at hemophilia camp?  Would my brother and I die?  What is hemophilia?  And would I give it to my kids one day?

Preferring not to focus on the hard questions, my teenage and young adult years were spent much in denial at the time about my own bleeding issues.  I went off to college to study dance and then launched a dance career.  All ballet dancers’ joints hurt now and then, right?  Joints swell when you dance too hard, right?  I hid my bleeding history because in the ballet world, if you were weak or injured, you were passed over for the next girl.  And so I wasn’t a bleeder like my brother. I just had heavy periods.  Girls can’t get it.

This thinking pretty much continued until I was pregnant with my first child, who happened to be a boy.  I now had to face hemophilia head on.  We had a smooth, unmedicated (except for my factor) delivery, and within 24 hours my son was diagnosed from cord blood testing.  But I knew he had hemophilia when I took off the Band-Aid from the heel stick administered three hours prior and saw it was still oozing with blood.  I just smiled, put a new Band-Aid on, and accepted that this thing called hemophilia is not a curse but a gift that was going to be in my life for a long time to come.  I was given this in order to be a living example how hemophilia is not a disability, but something that you can live with and honor the lessons it teaches about being stronger person.

I went from sister to bleeder to mother.  In the end I discovered that hemophilia is something that binds us together—all our fears, hopes, and dreams for our families and ourselves can be fully realized despite the fact we don’t make a particular clotting protein.