The Akin Foundation was started by Justin & Kristin Akin after losing two of their little boys to HLH. Following their tragic losses, they have found a way to direct their love for their sons into this heartfelt foundation built to help others. Justin Akin will soon lead another 700 mile bike ride to raise awareness for HLH.
1. When was the Akin Foundation first established? Why did you start this organization?
The Matthew and Andrew Akin Foundation was established in 2010 shortly after Matthew's death. Andrew had already passed away in 2009 and we knew we had to do something in memory of our sons to help make a difference in the future.
2. What is the mission of the Akin Foundation? How has it grown over time?
The mission of the foundation has changed over time but the key component has always been and will be to help families diagnosed with HLH. The current mission is to support the HLH Center of Excellence at Cincinnati Children's Hospital and their four core priorities of Research, Awareness, Clinical Care and Family Support. When we started the foundation, the HLH Center of Excellence didn't exist. I'm on the Parental Advisory Board for the HLH Center of Excellence so that is a big reason we are funneling our money into the center and working closely with the HLH experts on where to actually spend the money.
3. Can you tell me about the work your organization does and the program or programs you run?
Our foundation really has a myriad of projects. We hold two blood drives and at least one bone marrow drive each year. We also travel to various hospitals and medical schools around the country and give speeches about HLH. In fact, we've been asked to give a speech at Washington University Medical School next month.
In 2012, we donated 5 mobile therapy carts to the Music Therapy, Occupational Therapy, Speech Therapy, Physical Therapy and Child Life Departments at Cincinnati Children's Hospital. Each of the carts were filled with toys to help the therapists perform their jobs on a daily basis. Our organization also gives out a scholarship each year to a histio survivor who is graduating high school and going off to college.
When a newly diagnosed child with HLH checks into Cincinnati Children's for their bone marrow transplant, a social worker from the hospital reaches out to us and we send them a Toys R Us gift card for the child with $100 loaded on it. My wife, Kristin, and I are also volunteer bone marrow couriers. So we travel around the country transporting marrow between donors and recipients. Needless to say, this has been very rewarding! We're also currently working with Cincinnati Children's Hospital to figure out long term stay options for HLH families. This has been a top priority for our foundation since its inception.
4.) What are the biggest accomplishments of the Akin Foundation?
I truly believe one of the biggest accomplishments of our foundation is that we've helped save lives. For the past 3 years, we've purchased all of the keywords on Google associated with HLH. When newly diagnosed families are told their loved one has HLH the first thing they do is Google it. When they do, at the top of the page is the ad for www.matthewandandrew.org. In the ad it says "The world renowned HLH experts are at Cincinnati Children's Hospital." They then click on link that takes them to our website. From there, families either call or send me an email asking for help in getting their child to Cincinnati. I then help get them in touch with Paige Cripe, The HLH Center of Excellence Coordinator, who helps facilitate that process. Having families say "thank you" for getting their child to Cincinnati has been very rewarding. My goal all along was to get the hospital to start buying these keywords. Within the next month, this transition will finally take place. Another big accomplishment for our foundation is the book Kristin wrote, "Love Trumps Grief." It is the story of our journey with Matthew and Andrew and ultimately William, our adopted son who truly saved us. We've heard from friends, family members, strangers, doctors, presidents of hospitals, etc... that the book helped them in one way or another. The book has also opened many doors for us and provided a lot of opportunities to help make a difference.
5.)What do you think your constituents or beneficiaries would say is the best thing about your organization?
I would hope they would say we've helped raise awareness about HLH and saved lives. I would also hope they would say we've inspired them. We've been through every parent's worst nightmare, twice. But we're moving forward and having good things come from the tragedy.
6.) What are your goals for the next three to five years? What priorities will help you achieve them? What barriers are in your way?
Over the next 3 to 5 years, our goal is to help grow the HLH Center of Excellence at Cincinnati Children's Hospital. Being on the Parental Advisory Board, I have access to the Marketing Department, the Strategic Planning Department, etc... and even the President of the hospital who sits in on our meetings many times. Through the center, we will raise awareness about HLH, fund research projects and ultimately get a long term housing structure built for HLH families. Since we have the full support of the hospital, I don't see any barriers in our way. Kristin is also the only parent on the Leadership Committee at St. Louis Children's Hospital. Through that committee, she will help make a difference at hospital where we did not have a great experience.
7.) What is the 2013 HLH Ride for a Cure event ?
The 2013 HLH Ride For A Cure event is a 700 mile bike ride over 7 days. It starts on September 28th and we will be riding from Natchez, MS to the front door of Cincinnati Children's Hospital. There are 6 of us riding this year. Every morning, we will be creating a YouTube video dedicating that days ride to a child at Cincinnati Children's currently fighting HLH. I think I'm most proud that Sean Feltoe, a 23 year old HLH/BMT survivor is riding with us this year. We'll end up at the hospital the weekend of the HLH Conference where doctors from around the country will be coming in to learn from the HLH experts.
8.) When did it first occur? How has it grown overtime?
It started two years ago when the goal was to ride my bicycle from Amarillo, TX up Route 66 to Chicago, IL. Unfortunately, on day 2 I crashed and broke my shoulder. Last year, I went back to the site of the crash and rode the 700 miles back home to St. Louis. Another dad who had just lost his 5 year old daughter to HLH rode with me. With 6 riders this year, it is obviously growing. A videographer is coming along this year to film a documentary of our journey and to help raise awareness about HLH.
9.) How can our readers partake in this or future events?
Our events calendar is located at matthewandandrew.org. Outside of the 700 mile bike ride, we have a 14 mile bike/ride pub crawl coming up that is a fundraising event, a blood drive and a trivia night/silent auction.
10.) Where can our readers donate or watch your progress?
Readers can donate and follow our progress at www.hlhrideforacure.com. This is where the daily dedication videos are loaded each morning. Each rider's "Why I'm Riding" is also located on this website.
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