Meet Our Volunteers

Volunteer Spotlight


Jennifer Bryan – Circle of Friends Host

JenniferWhat inspires you to volunteer?
My daughter, Audrey, inspires me to volunteer for the Histio Association. Audrey was such a brave little girl during her journey with HLH—I want her to know that her Mommy is her biggest fan and that by sharing her incredible story, we are able to help others through some of the toughest times of their lives. I enjoy sharing Audrey’s story of strength, bravery and resilience with others as Audrey is living proof that histio patients CAN have happy endings. 

Why do you think it is important to volunteer?
We will be forever grateful for the people who cared for us during our time of need but now it is time for me to be the one to lend a helping hand. Whether it’s a shoulder to cry on, someone that will listen or someone who just “gets it,” I think it’s important to be that person.

 

Angie Bong – Fundraising Event Host, James E Doyle Memorial Golf Outing and Silent Auction

AngieAfter my husband James died, volunteering for the Histiocytosis Association and coordinating a fundraising event was a way for me to channel my grief in a way that would positively impact others and become a lasting legacy for James. Now in our seventh year, I've seen the impact of our work on other families and histio warriors. The research that is being conducted is funded largely from private donations and efforts like ours, so to know that giving some of my time as a volunteer can mean the difference between a patient surviving and a patient dying inspires me to continue our efforts. We are literally helping to save lives, and that's a remarkable opportunity and gift.

 

Theresa Jenkins – Fundraising Event Host, Casey's Bull Roast for Histio

JenkinsWhat inspires me to volunteer is knowing that as much as I give out I get right back.Volunteering at an event allows me to connect with others to share information and to just help and have a purpose. Having a child with a rare disease can leave you feeling helpless at times. But I have found that by channeling those helpless feelings into something, I actually find comfort. Holding a fundraiser and knowing the money raised will go to directly impact other families affected is also a comfort. Awareness events or connected with other families via circle of friends groups provides me comfort that I am not alone. It is important to volunteer because you are not alone. The old saying it takes a village to raise a child well it applies to real life too. If takes a village to run a village…every organization is run by lots of people it's not one person doing it all alone. Each and every person who volunteers their time helps to make the organization successful and the more successful the organization the more money they can raise, awareness they can spread and support they can provide. 

 

Kylene Johnson – Fundraising Event Host, Striking Out HLH

Kylene

What inspires me to volunteer?
I lost my son, Connor almost 4 years ago and we do fundraisers to not only keep his memory alive but in hopes that one day there will be a cure and no one else will have to go through the pain of losing a child.

Why do I think it is important to volunteer?
I think volunteering is good form of therapy for some; for me.  It is a way for me to honor my son all while helping others. 

 

Jeff Westlake – Website Content Reviewer

Jeff

When I was diagnosed with MS-Langerhans Cell Hisiocytosis in 2012, the online resources of the Histiocytosis Association were a lifeline to my family and I as we strove to understand what it would mean to live and grapple with LCH. I volunteer as a way of expressing my gratitude for the work of the Histiocytosis Association and to contribute to the hope of defeating these devastating diseases.  As Histio Warriors fighting an "orphan disease,” we are often made to feel as though we ourselves are orphans: abandoned and forgotten by the wider medical community and those that fund the resources and research that are vital to our struggle. Volunteering is one way of showing Histio "orphans" and their families that they are not alone and that there is a whole band of volunteer "warriors" who are fighting with them. 

 

 

Ryan and Tracy Brown: Fundraising Hosts

Ryan and Tracy BrownWhen our son Ian was diagnosed with Langerhans cell histiocytosis (LCH) in 2006, we were fortunate to quickly find the Histiocytosis Association. Their online services and staff put us in contact with other families and with doctors familiar with the disease, which was invaluable as we navigated through 4.5 years of treatment and 3 recurrences of the disease. In 2007 we began volunteering for the Association as a way to feel empowered and to give back, and share with others the knowledge we’ve gained along the way. Since 2010 we have hosted Histio Hike – Shenandoah. While planning and hosting such a large event is a lot of work, it is one of the most rewarding things I have done in my life. To have families who may have otherwise never met another histio patient tell us how much the weekend means to them is incredibly satisfying.

 

 Jim and Leisa Greathouse: Advocacy

Leisa and Jim GreathouseJim and Leisa Greathouse welcomed a baby boy on August 7, 2005. Samuel Brown Greathouse was diagnosed 10 months later with Langerhans Cell Histiocytosis (LCH). After 16 months of treatment and two preparations toward a bone marrow transplant, Samuel’s body succumbed to the disease on September 17, 2007.

What do grieving parents do in a situation like this, other than ask why? We decided to get involve with the Histiocytosis Association for a number of reasons: 1.) To help pave a smoother path for those that follow, or better yet, so that other children or families never have such a horrid event take place in their life; 2.) To gain a sense of control in an out-of-control situation; 3.) To fulfill a need “to do something”; 4.) To continue to learn and better understand the disease that took our son’s life; and 5.) It‘s a way of coping so that some healing begins to take place. 

We are very proud to volunteer for the Histiocytosis Association. They are the most credible and trustworthy organization funding research on an international level for the common good. Their principles and goals align with our motivations to work toward a cure and the prevention of histiocytic disorders.

 

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