Friday, April 8, 2016

How Time Flies

One year ago, excited and nervous, we jumped into the deep end of the pool and announced the creation of a new non-profit organization - Hope From Harper.  We want to take a moment and look back at what we've been able to accomplish over the past year and where we hope to go next.

We started with a simple desire to bring hope to children and families fighting childhood cancer through investments in research and improvements in care.  Our intention was to continue Harper's legacy of hope and joy and help raise the spirits and the care of other children facing childhood cancer today and into the future. We maintain that goal today, and are continuing to look for ways to fill unmet needs in the childhood cancer community.

As a small startup charity we knew to independently fund childhood cancer research would be difficult, specifically since we lack the infrastructure for grant application review and selection.  With limited funds available to start we understood that our impact would be muted if we went it alone.  So, we partnered with the St. Baldrick's Foundation, a leading childhood cancer research funding organization, with a worldwide presence funding more pediatric cancer research than any other private organization.

We are proud to report that since starting work with the St. Baldrick's Foundation in early 2015, Hope From Harper volunteers and shavees (and we've shaved more than 100 heads!) have successfully raised more than $116,000 for childhood cancer research in Harper's memory. Our combined efforts have been so successful that in 2015 Hope From Harper had the opportunity to name a research grant with Dr. Daniel Lee, supporting exciting work on a new treatment approach called immunotherapy.  Immunotherapy holds the potential to allow tailored and custom therapies where a patient's own immune system can be used to fight and defeat cancer cells and represents one of the most promising developments in cancer treatment today.

But research is not our only focus, and so our work has continued in other areas as well, exploring and ultimately working to build other programs that directly and indirectly assist kids and families in the fight for their lives.  Development of ideas into programs has taken more time and effort than we had originally hoped, but we have kept at it, relying on supporters and volunteers to help drive us towards programs that can we can launch.

We now quarterly bring a meal to patients, families and staff at the Addison Jo Blair Cancer Care Center at Kosair Children's Hospital. Based on our personal experiences, we know that kids and families find that food options in the hospital quickly lose their novelty, and the logistics and options for getting food from outside the hospital can be challenging.  Our volunteers bring a hot meal, prepared by partner restaurants or caterers, to the floor and serve any and all (patients, families and even the incredible medical staff) that are there that day.  The availability of different and delicious food, offered at no charge and served with a smile can bring light to an otherwise dreary day, and we're thrilled to be able to provide it.  We hope to expand this program to provide food even more regularly as we build our list of partners and volunteers who can help us do it.

Serving lasagna

In late 2015 we provided a special gift to our friend Gabe. Gabe began treatment at about the same time as Harper, and we had the pleasure of meeting him and his family during Harper's journey.  Gabe underwent a stem cell transplant and we were able to provide some comfort and entertainment items for him and his mother based upon our experience during Harper's tandem transplant.

Gabe with his new Nerf gun

Gabe's gift got us thinking, and over the course of several months we worked with the transplant team at Kosair to develop a process where all transplant patients will be given the opportunity to receive a transplant kit.  These kits will be custom-filled based upon the preferences of the child and caregiver and our own experience of useful and sometimes overlooked items for a long hospitalization.  We launched our kit program in March 2016 and are looking forward to providing these kits to all Kosair transplant patients in the future.

We know that while there is much we can and will do to help bring hope to kids and families fighting cancer, we also recognize that we can't be everything to everyone, and with that in mind we have chosen to support select complementary childhood cancer organizations.  One of the first is Camp Quality Kentuckiana which offers a special summer camp for kids who are fighting or have fought cancer, allowing kids with cancer be kids again.  Harper had the opportunity to attend camp in the summer of 2014, and enjoyed it immensely.  So, in order to help spread the impact of our organization Hope From Harper has sponsored the zip line for the 2016 camp.  They are expecting a record number of campers (which is exciting and somewhat saddening) who will have the opportunity to experience flying down the zip line!

Harper on the zip line in 2014

There are several other programs and projects in the works.  While we are bursting to tell everyone about them, we want to ensure they are fully baked before we share, so instead we'll share a little bit of the FUN we've had along the way this year as well!

In August we held a Chili Cookoff, inviting supporters to enter their best homemade chili for a chance to win a coveted GOLDEN SPATULA! Contestants entered the spicy, sweet, vegetarian and open classes with attendees of the event voting for their favorites! It was a great time with many families enjoying delicious chili!  While they were all good, the top spot had to be awarded and went to Brenda Simmons with her vegetarian chili entry!

In November we hosted the Bootlegger's Bash, a prohibition-era themed event with great food and live jazz! We had such a great time, we plan to repeat the event again this coming November!  Keep an eye out for more details later this year!

photo courtesy of Karen Bassett

photo courtesy of Karen Bassett

We have certainly been blessed to have such great support for our efforts to extend Harper's legacy of hope and joy to other kids and families undergoing treatment for childhood cancer.  We thank each and every one of our volunteers and supporters for helping us have such an incredible first year, and we are looking forward to continuing our work and doing even more to help kids and families and ultimately find cures.


- Brian and Melissa Wehneman