Monday, August 31, 2015

Every Step Counts

Mona Tower, Jeanne White Ginder, Bob Robinson
This week I was fortunate enough to attend the BDAI Annual Meeting. At this event we celebrate “the year that was” for BDAI. Our Executive Director, Bob Robinson, refers to it as our kum ba yah event. We were lucky to have an inspirational keynote speaker this year, Jeanne White Ginder. Jeanne is the mother of Ryan White. Ryan was a hemophiliac who died of AIDS in 1990. He received tainted blood as a result of one of his treatments for hemophilia. He was not allowed to attend Western Middle School because of his disease. At the time the general public knew very little about the spread of AIDS and there was fear within the community. He fought the Russiaville, IN School District for the right to attend school with AIDS and won. The family moved to Cicero, IN and Ryan was able to attend school there with little incident. Ryan’s battle became very public. He became the poster child for HIV/AIDS. Jeanne told us the story of her son and his courageous battle with two debilitating diseases, and the prejudice that he endured. Through it all Ryan kept a positive attitude and realized that it was people’s fear that drove them to think that way. One of the themes I got out of Jeanne’s presentation was that one person really can make a difference.
            BDAI’s mission is to improve the lives of individuals with bleeding disorders like hemophilia and von Willebrand Disease. Each one of us can make a difference in the lives of people with bleeding disorders, and one way to do this would be participate in our annual Walk. This year is the 6th annual Walk for Hemophilia. This is my favorite BDAI event of the year. BDAI hosts education, advocacy, and fundraising events all year long, but this one is by far my favorite.
Here are the reasons I like this event:
1.     There is a real sense of community at this event. Many stakeholders in the organization come out to participate, and in large numbers. Our staff, a majority of our board of directors, our families, and industry are all in attendance. It is truly a family event!
2.     The best part is that there are many from outside the community that attend, as well. There are friends and family there who do not attend any of our other events during the year.
3.     There is a sense of pride. My children like this event because they can bring their friends who don’t have a bleeding disorder. Those friends get to meet their friends and counselors from camp.
4.     It involves exercise. I like to exercise. The importance of joint health through movement and exercise is message that we try to convey to all those living with a bleeding disorder.
5.     It raises much needed funds for educational programs, assistance programs, advocacy, research, and camp.
6.     The scenery is beautiful. The Walk through Lincoln Park and Chicago’s beautiful Lake Front on a late summer morning is just spectacular.
7.     There’s always a medal at the end. Enough said there.

Please join us!
Saturday, September 12th, 2015
Lincoln Park - South Fields, North Avenue & Stockton Drive
1746 N. Stockton Drive, Chicago, IL 60661

What's your favorite part of the Walk?

Thursday, February 5, 2015

Community Connections Blog


Welcome to the BDAI Community Connections blog page!  The goal of this blog is to allow community member to ask questions or discuss concerns, and for experienced community members to help answer these questions and share their experiences.  We know finding out that you or a loved one has a bleeding disorder can be a scary thing, but we have also learned is that one of the best resources the bleeding disorders community has is each other.  

With this blog community members can write in to ask questions or discuss a concern they may have, and be connected with someone who has been in their shoes.  So, if you are a parent, caregiver, or person with a bleeding disorder who is new to the community or facing new experiences, please post any questions or concerns you may have.  On the flip-side of that, those who are experienced community members and are willing to give advice or share personal stories with these families, please respond to these posts and share your knowledge!  With your participation, we can build a stronger community for those people with bleeding disorders and their families.

*All posting can be done anonymously by simply clicking the drop down box entitled "Comment As" and selecting the anonymous tab.  

(Note:  Any personal information shared is at the discretion of the poster.  BDAI does not assume responsibility for information shared or advice given.  This forum is intended to allow community members to share information and experiences with one another.)