Emily and Dr. Grupp are WebMD Health Heroes for 2013. Each year, the WebMD Health Heroes awards celebrate those who have met a health challenge and are giving back to others in an inspiring way.
“WebMD Health Heroes represent individuals who are dedicated to encouraging health and wellness throughout their communities, and this year’s winners are achieving remarkable success in their goals of inspiring others,” said Kristy Hammam, editor in chief, WebMD Magazine. “The 2013 WebMD Health Heroes are making a positive impact in the lives of those facing their own health challenges by extending their support to others.”
The Health Heroes are featured in the November/December issues of WebMD Magazine and WebMD Diabetes. The 2013 WebMD Health Heroes are:
- Emily Whitehead/Stephan Grupp, MD: Emily Whitehead was close to death from leukemia when Dr. Stephan Grupp genetically engineered her own infection-fighting cells to fight her cancer. Now in remission, Emily and her family travel to Washington, D.C., with her oncologists to urge legislators to fund T-cell and other pediatric cancer research. In addition, they have supported the Cancer Center at the Children’s Hospital of Philadelphia to raise funds for their programs by speaking at CHOP advocacy events and sharing Emily’s story with the press.
- Simone Bernstein: This college student co-founded VolunTEENnation.org, a program that establishes sports clinics for children with autism across the country, helping them get fit, lose weight, and learn important skills. VolunTEENnation.org has connected 14,000 teens with volunteer opportunities within sports clinics for children with autism and created opportunities for nearly 500 children to participate in sports clinics in 12 cities last year. In addition, Simone created a network of 50 community gardens that have yielded 15,000 pounds of fresh produce for local food banks.
- Barbi Haase: With a double devotion to healthy food and saving money, this mother of six organized a produce distribution system throughout her region, enabling families to buy more produce, learn how to prepare it, and save money. Haase’s organization, The Noisy Rabbit, also donates food to needy families in the area, with distribution to nearly 700 families.
- Manny Hernandez: Hernandez established Diabetes Hands Foundation to harness the power of social media to educate, empower, and engage people with diabetes around the world. His two social networks, TuDiabetes.org and EsTuDiabetes.org, have more than 50,000 registered members. Since 2010, Diabetes Hands Foundation has given more than $250,000 to diabetes programs in underserved areas in the U.S., Haiti, Dominican Republic, and Ecuador.
- Tracy Milligan: After discovering her school district discriminated against children with diabetes, Tracy worked with the American Diabetes Association, legislators, and parent groups to ultimately help change state law. With Florida House Bill 747 now in effect, she is currently contributing to national efforts to change the law in other states.
- Lee Morgan, DVM: This veterinarian provides care to police dogs, guide dogs, and draft horses at no cost and leverages revolutionary stem cell therapies to help pets regain their mobility. Morgan uses innovative therapies, which regenerate cartilage and nerve function, that are used by only a handful of veterinarians across the country.
To learn more about the 2013 WebMD Health Heroes, please visit www.webmd.com/healthheroes. You can view and download a copy of the magazine here.
On Sunday, November 10th, Emily celebrated 18-months cancer free! We took a few photos to celebrate – here is our favorite (she was laughing at daddy)!
Emily had her 18 month follow-up visit at CHOP two weeks ago and everything still looks great! We made our trip to Philadelphia into an extended weekend.
Friday we started traveling and stopped in Hershey to stay overnight and visit with family. Saturday morning Emily wanted to visit the nurses at Hershey Children’s Hospital and see the new hospital again. She loves to stop there and visit the nurses and staff who took great care of her!
We continued traveling to Wilmington, DE to spend time with more family – Aunt Kristen and Uncle Nick who are expecting a baby in the spring – Emily is looking forward to having another little cousin. We went to a farm and got lost in the corn maze (it was a 10 acre maze!). We finally had to just leave the maze and walk AROUND the cornfield to get back to where we started!
On Sunday we went to the Parkway Run/Walk to benefit the CHOP Cancer Center. Team Believe raised over $4,085 this year! More than 10,000 patients, families and supporters were at the run which raised more than $1,030,000! Thank you to everyone who joined the team and/or made a donation. It means a lot to us that you support childhood cancer research!
From there we took the train to NYC. For some reason Emily was nervous about taking the train but ended up loving it. We took Emily to her first Broadway show – The Lion King. We were worried she wouldn’t like it or be bored after 15 minutes. When we asked her if she was enjoying the show she said “No I don’t like it….I LOVE IT!!”.
On Monday we visited the Intrepid Sea, Air and Space Museum Complex and then decided to have lunch in Central Park. That evening we attended the Cancer Research Institute’s 60th Anniversary Gala, “Immunotherapy ROCKS Cancer”, which is why we were visiting NYC in the first place! It was held at Cipriani on 42nd Street across from Grand Central Station. The Cancer Research Institute (CRI) visited us in August to put together a really wonderful video story of Emily’s treatment (we will share as soon as it’s online) and showed it at the dinner. Leading researchers in immunotherapy were honored. Other patients who have been treated with immunotherapy were also at the event. We were really excited to see Dr. June there! Four awards were presented: Serial tech entrepreneur and philanthropist Sean Parker (of Napster and Facebook) and MedImmune biotech head Dr. Bahija Jallal were presented with awards for their dedication to advancing cancer research. We talked with Sean Parker for a few minutes and he is really excited about immunotherapy and hopes to rally support to raise millions of dollars to continue work towards a cure for cancer. Dr. Michael Karin, professor of pharmacology at University of California, won for his groundbreaking research, and Dr. Jill O’Donnell-Tormey, CEO and director of scientific affairs at CRI, was presented with an award for her leadership of CRI. CRI funds immunotherapy research including Dr. June’s research with the T-cells. The group JOHNNYSWIM performed.
Tuesday we took the train back to Philadelphia. In the morning Emily had a photo shoot with Dr. Grupp. They won an award and the announcement will be out in November. We wish we would have taken a photo of Emily and Dr. Grupp during their photo shoot. Tom was trying to make Emily smile during the shoot and he was doing some pretty inappropriate things with two stuffed animals above the photographer’s head to get her to laugh. We then met Austin Schuetz who is the 21st child to get T-cells – his family was also in the 60 Minutes Australia segment. He received his T-cells on the day we were there and is doing really well. We also talked with two other families who were there for follow-up visits.
We then had a chance to visit more of the T-cell team. We met with Dr. June, Dr. Kalos, Dr. Levine and finally met Dr. Porter who works with the adult T-cell patients. Dr. June brought his dog to work because he knew Emily would be visiting and everyone knows she loves dogs! Dr. June’s wife Lisa was a student at Penn State and danced in THON twice! Dr. Kalos showed her a new app on his iPad. Dr. Levine gave Emily a tour of his lab. Emily thought it was funny that we had to put suits on to protect the lab from germs, dirt and dust. She had a chance to see the big freezers where the cells are stored and the equipment used to grow the T-cells. It’s fascinating. The lab just got three new freezers to store cells and Emily gets to name them. The lab names all of their freezers after Simpsons characters.
Emily doesn’t have to go back to CHOP until April which will be her two year visit, but will still continue to be seen every 6 weeks for a check-up and blood work in State College. We had a great weekend traveling and being together. Every time we get to do something with Emily for the first time – like take her to her first Broadway show – we just keep thinking about how lucky we are to be able to do that. I almost started crying when the show began just watching her eyes light up and listening to her giggle and watching her clap and dance in her seat. There was a time when we thought we would never get to do things like that with Emily again. We say it ALL THE TIME but we never take anything for granted and enjoy every day we have together and we try to have as much FUN as possible
Here are some photos from the weekend:
Some of those who signed up with Team Believe!
Intrepid Air and Space Museum.
There was a replica of the ship made OUT OF LEGOS! We are obsessed with Legos at our house and wish this was sold as a set so we could put it together. I wonder how much it would cost if they did sell it as a set??
Cancer Research Institute Awards Gala!
Emily had 13 tubes of blood taken at her appointment!
Visits with Dr. Kalos and Dr. June
A visit to Dr. Levine’s lab! Emily loved the roll of bubble wrap and wants to order one!
A few weeks ago 60 Minutes Australia visited us. They are doing a story on the t-cell therapy at Children’s Hospital of Philadelphia (CHOP) which will air on Sunday. We will be able to view it online after it airs – we will post the link when it’s up! Here are a few photos from the time we spent with them. They had specific ideas of what they wanted to get and where they wanted to go. They wanted to capture Emily doing everyday things, so we went for ice cream and then she went for a haircut and mani/pedi! Those really aren’t “everyday” things for her (well, except maybe the ice cream!) but they wanted her to have fun while they were filming. Thank you to those local businesses who let the crew interrupt their day for filming! I know we get comments from those of you who want to see more coverage of the community support for Emily. During every interview we’ve had we talk about how thousands of you from our community and around the world prayed for Emily, sent positive messages, sent cards & gifts, held fundraisers and prayer vigils, donated vacation days (our colleagues from Penelec and Penn State!), and of course we talk about THON! Usually, the message the media wants to get out is focused on the treatment Emily received so that others are aware of it and other children can be helped. There is usually only a limited time to get their message across (usually 3-5 minutes). A lot of our personal story is never told but please know that we DO tell it! We received so much love and support (and still do!) and we haven’t forgotten. Although we don’t know for sure how much of our personal story the 60-minute Australia show will actually tell – and the focus will still be on CHOP and the t-cell treatment – they did seem the most interested in telling more of the personal side. They spent a lot of time out in the community capturing the purple ribbons and messages that are still around and getting a feel for our wonderful little town of Philipsburg and surrounding communities, so we will see! If not this time, there are several other things possibly in the works where we hope we can tell more of Emily’s story. Everyone who has followed her knows there is so much more to tell! It’s perfect timing for the story to air because September is Childhood Cancer Awareness Month! A preview of the show is posted below too.
The Virtual Hope Express (VHE) will be rolling through Philipsburg, PA again on Saturday, September 14!
We will leave our house (Emily Whitehead’s house) at 6:00 PM and end at Corban Potter’s house 2 miles down the road. Following the run / walk / ride, we’ll celebrate Philipsburg’s two cancer beating kids with a picnic at Corban’s house!
What is the Hope Express? Each year, a team of runners leaves Hershey, PA the Thursday evening before the Penn State Dance MaraTHON and runs relay style 135 miles to the Bryce Jordan Center (BJC) where THON is held, carrying letters from the children of the Penn State Hershey Children’s Hospital to the BJC in State College, PA for the THON dancers. On September 14, teams across the country (New York! Texas! Chicago! Philipsburg!) will be joining together, each to run 135 miles, just like the Hope Express does in February. The Philipsburg VHE will run from Emily’s house to Corban’s house – two children from our town who have fought cancer. It is just under two miles, down hill. You can run, jog, walk, register your dog, whatever you want! The idea is to raise funds and raise awareness for childhood cancer! Won’t you join us? Register for the Philipsburg, PA, team here (choose 2-mile walk/run).
When you register at the link above, you are making a $25 donation to the Hope Express on behalf of our team. The evening of 9/14, we will begin sign-in around 5:00 PM and leave Emily’s house at 6:00 PM. You can run, walk, ride a bike, pull a wagon, push a stroller, skip, ride the hay wagon, or get from A to B however you want! If you register by August 30,you will be guaranteed a super cool t-shirt. Trust me, they will be excellent
In 2012, Emily and Corban were both sick in the hospital when the Hope Express teams left Hershey. This year, Emily and Corban were both HEALTHY and met the teams in State College at the finish line! This is a very special event for our families and we hope to have you stand with us in our fight against pediatric cancer!
This is the logo for this year’s t-shirt! Are you thinking “Hey! I thought we were supposed to wear gold ribbons for childhood cancer! Why the pink ribbon?” Well, last week, Connie Ehresman-Angus, co-founder of the Hope Express, mom of leukemia survivor Gabe, was diagnosed with breast cancer. In her honor, we have improved our logo a little bit to include a pink ribbon with her initials. Remember, if you register by this weekend, you’ll receive a t-shirt with your registration. Additional shirts can be purchased for $12 each. The logo has other meanings as well! If you know Corban, then you know he loves tractors! If you know Emily, you know she loves dogs, butterflies, and purple! Hope to see you there!
CANCER. WON’T. WIN.