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Earlier this summer, we introduced you to Will and Tameelah, our summer Policy and Government Education interns. Both young adults have been active in their local bleeding disorders community and are passionate about keeping their peers involved. This week we asked Tameelah and Will to share how they want to make their mark in our community.

Will:

How do you train the next generation to replace you?

This is a question I鈥檝e been thinking a lot since I began my summer internship at HFA. I鈥檓 not plotting an intern-led coup anytime soon, but I am interested in and concerned for the next generation of bleeders who will rise to the challenge of leading our community. Some older community members I鈥檝e talked to say that my generation doesn鈥檛 understand our history; that we take for granted the privileges that they fought so hard for. I understand where the critics are coming from, but I don鈥檛 think the prospects of your future leaders are necessarily so dismal. Life with a bleeding disorder聽has changed, and as a result young people鈥檚 understanding of the role that a community plays has changed as well. I believe that if we play our cards right the future of community advocacy will be in good hands for the foreseeable future, but it’s up to us young people to step up to the plate and ensure a smooth transition. What can we do to get ready for this huge responsibility?

I want to explore solutions to this problem during my internship. My goal this summer is to build a program that helps the next generation of people with bleeding disorders transition from beneficiaries of advocacy to young leaders in the community. I was inspired by my experiences at a summer camp for children with rare diseases, which I attended as a camper for many years before more recently returning as staff. Camp understood that this transition could be a difficult one, so the leadership team created a counselor in training program for former campers who were interested in one day becoming counselors. CITs sit somewhere between camper and counselor, contributing to their camp community but also receiving guidance and insight from those who had gone before. I benefited a great deal from that program, and I want to transfer the knowledge I gained there to the bleeding disorders community. Drawing on this experience, I want to create a transition program for HFA that helps young people move from the beneficiaries of advocacy to active participants in it who operate at a self-directed level.

I believe that young bleeders today are far readier to contribute to the community than the most pessimistic naysayers realize, and I hope that by creating this program I will create a natural outlet that empowers our next generation of advocates to act. Back when I was a camper, the prospect of becoming a counselor seemed daunting or even impossible: try as I might, I could not envision myself ever holding the job. The CIT program changed all that. My mentors offered me the chance to grow into the shoes that past counselors had worn before me while always being sure to catch me when I fell, and at the end of my CIT experience I felt prepared to become a full-time member of staff. Since then I鈥檝e gone on to mentor CITs of my own, and at the end of my time as a counselor I can attest to the fact that the CIT program has helped camp transition between three generations of staff seamlessly. I believe that by empowering young bleeders today HFA can accomplish a similar feat, and I hope you鈥檒l join me as we figure this all out together!

Tameelah:

Advocating for the community has always been a major part of me. I鈥檝e always been driven to make a difference not only for the younger generation but also for those who鈥檝e passed away and made a difference for us. The day my little brother was born completely changed me and I realized I needed to make a difference in some way for his generation.

I was unaware about what the bleeding disorders community was when I was introduced to it at 16 years old. I knew that my grandfather and cousin had hemophilia, but both had passed and I had no ties to the community until Eli was born. I started hearing stories about how much the community has changed since back the days of my grandfather鈥檚 and Ryan White鈥檚 stories. I learned a lot about my grandfather that I never knew. I personally never knew how my grandfather struggled and what he went through as a severe hemophiliac. I knew I had to do something, so I started learning about ways to advocate and get people more involved.

The very first thing I did to start advocating was my senior project on hemophilia. I started off with teaching my peers about the statistics and the basic information. Then I brought my brother in. At the time he was a year old and he had just got his port placed in his chest. I shared a video of him getting his medicine and I explained how much his medicine cost per year. This motivated my health teacher to teach even more about hemophilia the next day and I ended up sharing my story again! This made me even more excited and I decided to take it a step further. I advocated at the state advocacy days and by 2017 I joined as a junior board member for Hemophilia of South Carolina.

Joining as a junior board member was not for my personal benefits; it was for the younger generation. My goal is to keep our youth engage and active in some way, and I try to find ways to help others become motivated enough to take the next step. The first question I ask is, 鈥渨hat can we do for you? What do you need to see or to do to keep yourself and others in your age group engaged?鈥 When we get the younger generation engaged, we will be able to raise better advocates. We will be able to grow even more as a community and their stories will be more impactful than our own. An impactful story will motivate others like mine did.

*Thank you to Takeda for a charitable donation for making the Policy and Government Relations internship possible

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