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.

#sharehope

- Brian and Melissa Wehneman

Thursday, March 17, 2016

Karting for the Kids!

 

On Thursday April 14th Hope From Harper and Camp Quality Kentuckiana will host the Karting for the Kids event at Bluegrass Indoor Karting.

Drivers can be as young as 7 years old (48 inches in height required) and race fees start at $20!

To register for the event, please visit http://tinyurl.com/karting4kids  

All proceeds benefit kids fighting cancer through Hope From Harper and Camp Quality Kentuckiana


Friday, October 2, 2015

Gabe


When Gabe was 17 years old, his life, like those of so many teenagers, was focused on finishing high school, playing his XBox, watching TV, seeing movies with friends and (unlike most kids) driving his white '82 Super Sport El Camino.  But while taking his final exams during his Junior year he suddenly collapsed at school and his normal teenage life was interrupted by a diagnosis of medulloblastoma - a cancer tumor on his brain stem.

Gabe underwent surgery, chemotherapy and radiation and fought his cancer for 15 months before being declared No Evidence of Disease in August 2014. Gabe then got back to continuing his regular life but in May 2015, just 2 days after graduating from St. Xavier High School, Gabe and his family received the news that his follow-up scans showed he had relapsed.

Now Gabe is undergoing a stem cell transplant, which is an aggressive and a far-from-easy treatment.  He has received extremely strong chemotherapy, obliterating his bone marrow and immune system, and has gotten infusions of his own stem cells to allow his body to rebuild his bone marrow so he can once again produce his own blood cells and immunity. While his bone marrow regrows, he fights pain and weakness and requires blood and platelets every few days.

Gabe and his mom Lisa (who is staying with him in the hospital) were the recipients of our first-ever Hope From Harper Transplant Survival Kit when Gabe was admitted for his stem cell transplant.  Stem cell transplants can involve hospital stays that can be weeks (and sometimes months) in length without being able to leave the hospital. Having a few comforts (especially a few things they didn't think of or know to bring with them) can make life a little more bearable during such an ordeal.  Their kit was specifically designed based on the tastes, preferences and interests of both Gabe and Lisa.








Gabe is now on day +8 of his transplant (8 days after stem cell infusion), with many more to go before being able to leave the hospital and continue recovery at home. We wish him and his family continued recovery and the end of Gabe's cancer journey.  They appreciate your support and prayers.

We will be continuing to work toward supporting other kids receiving cancer treatment at Kosair Children's Hospital. Your ongoing support of Hope From Harper make this and other programs benefiting pediatric cancer patients possible.

Tuesday, September 1, 2015

Auction!

A generous Hope From Harper supporter has recently donated a pair of tickets to the America's Got Talent LIVE tour show in Louisville, KY on October 11th.  We are holding a "not so silent" auction on eBay to allow the tickets to go to the highest bidder!



Please feel free to go visit the auction to check it out.  The tickets are 3rd row Orchestra section, so GREAT seats!

The auction ends on September 9th at 9:28AM - so don't wait to get in your bids!

Face value on the tickets is $65 each, but the starting bid is only $50 for both!


The highest bid will go to Hope From Harper, with no fees, as the item is listed through eBay's Giving Works program (Direct Listing). 

Hope From Harper is now an eBay Giving Works participating charity, and any listing can be listed to benefit Hope From Harper!  If you sell items on eBay, be sure to consider choosing Hope From Harper to benefit from your sales!



Sunday, August 16, 2015

Bootlegger's Bash

Join us November 6th for Bootlegger's Bash at The Calumet Club - a 1920's Gatsby-esque speakeasy experience with live music, dinner and dancing!

Tickets are now on sale - http://tinyurl.com/bootleggerticket


Tuesday, July 21, 2015

Scholar Grant

One year ago we heard the news: After being declared NED just months before, Harper’s cancer had relapsed. For us, this blow was possibly more devastating than the original diagnosis. For Harper, it meant she got to see more of her nurse, which she was glad about. Amazingly to us, Harper walked out of that appointment with a smile on her face.

There is something about everything that you can be glad about, if you keep hunting long enough to find it.” ~ Pollyanna

There have been many times since then when we have struggled to find something to be glad about. Other times, it has been easier to feel the love and joy around us and so we continued to move forward. In March we shaved, raised money, and made new friends who helped celebrate Harper’s life and the promise of research to benefit others. In April we founded the Hope from Harper charity, bringing Harper’s legacy to life in exciting new ways. Most recently we announced the creation of the St. Baldrick’s Hope from Harper Hero Fund. Today, we have the great pleasure to announce one way it all ties together.

Thanks to your generous donations and support the Hope from Harper St. Baldrick’s Scholar Grant has been established. This year, this grant funds research at the National Cancer Institute in Bethesda, Maryland, headed by Dr. Daniel Lee. Because of the Hope From Harper Hero Fund, Dr. Lee will be able to continue to research an exciting new option for pediatric cancer therapy.  Dr. Lee’s research is laying the groundwork for several clinical trials to be initiated studying breakthrough immunotherapy. This therapy approach has the potential to radically change the way we treat many childhood cancers. Because of work like Dr. Lee’s, immune cells can now be engineered to recognize and kill cancer cells and then administered to patients.  Dr. Lee’s project is one of the first to bring this promising therapy to children with cancer. You can read about Dr. Lee's grant here.

As we’ve said before, we believe this is just the beginning. Hope from Harper is dedicated to funding lifesaving pediatric cancer research and improving the care of patients and their families. In the future we look forward to announcing more details on how we plan to continue to spread Harper’s joy - helping patients and families to find something to be glad about, even on those many days when being glad is the last thing on their minds.