Amazing Stories

Our Chick-fil-A Birthday Dinner

As you know, we marked Charlotte's 7th birthday on Monday.  The day included laughter, tears, hugs, an honorary mention on WCVE, dinner at Chick-Fil-A, a chocolate milk toast, and a showing of Finding Nemo. Roger and I were touched by the sweet messages we received as well as the generous donations made to the foundation in her honor that day. 


On Friday morning, I turned to Roger and said, "Wow! It sure has been a long week. Monday seems like a long time ago."  He agreed.  Between the emotional exhaustion at the beginning of the week, the Wine Down event on Wednesday in which we raised $1000 for CJSTUF (hurrah!), and the normal business of our jobs, it had proven to be a very long week, indeed.  


Then came Friday.  I ventured off to my job at the Dominion School and Roger had the opportunity to participate in the Moriah McNeil Celebrity Golf Classic to benefit ReeseStrong.  One of the generous patrons of the organization had bought an extra foursome and donated it for use by dads of pediatric cancer patients.  Roger joined Reese's dad and a few other guys for a beautiful day on the links.  

Roger, Walter Klauer, & Emanuel McNeil

Moriah's dad, Emanuel McNeil, is a former NFL football player. He lost his daughter Moriah to cancer in 2004 and organizes this charity golf tournament every year in her honor.  The proceeds benefit a different children's charity annually.  With these connections, it made sense that quite a few NFL players would be hitting the links.  It wasn't until Roger reached the tournament, however, that he realized some of these guys were the same football players who came and sang Frosty the Snowman to Charlotte on a hot summer day when we were holed up in the ASK clinic for a treatment in 2009.  The visit had been a huge hit with Charlotte and had even been featured on the CBS news (briefly).  As Roger talked about this with the football players, many of them mentioned remembering Charlotte.  Then one guy pulled out his phone and showed us this video.  

He has had this video on his phone since 2009.  Roger was floored! 

In the meantime, among my many meetings of the day, I was scheduled to interview a potential instructional assistant for the Dominion School.  The young lady arrived at the scheduled time and we began to talk about her work history and why she was seeking employment with us.  I asked her to say a little bit about why she liked her job and she told me this story. She works at Build-a-Bear. 


"I really love being able to see the happy faces on the children.  A few years ago, I had the opportunity to work with a family that came into our store.  The little girl was about 3 or 4 years old and she was sick.  She came into the store after hours with her best friend and together they made creations for her, her parents, and her best friend. We were so touched by this little girl and found out a few weeks later that she had passed away.  I still think about her a lot and how we were able to make her happy."

Our creations from Build-a-Bear,
including Frosty the Bad-Ass

As I sat there listening to her story, I realized where this was going.  I was near tears as I listened to her accounting of our very own Build-a-Bear visit.  I was thinking, "Should I say something? Is that appropriate?" Finally, I realized I needed to tell her.  I said, "I hope this doesn't upset you, but I need to let you know, that's my daughter you're talking about." I pointed towards the picture of Charlotte on my desk and the girl's jaw dropped to the floor.  She said, "Oh my goodness! That's her! We have her picture in our office at the store and I still think about her and talk about her all the time!"  We both started crying.  


Eventually, we composed ourselves and carried on with the rest of the interview.  On my way home from work, I got a message from Roger that he had something interesting to tell me.  I told him that I had a great story for him as well.  We met up and recounted these stories to each other in disbelief and amazement.  


I don't always believe in "signs" or messages, but perhaps these simple, touching stories delivered to both Roger and myself on the same day are a way of showing us that Charlotte continues to touch people's lives as much in death as she did in life. Of course, I think of our girl every single day. But it warms my heart in unimaginable ways to realize that she had such a profound impact on people who are virtual strangers.  


That, my friends, is the best birthday present anyone could ask for.  Don't you agree?

This Is Why We're Here

We here at CJ's ThumbsUp Foundation often post photos of financial assistance grants going out in the mail with the caption, "This is why we're here" or publish updates about this event or that, trying to keep everyone energized about the mission of CJSTUF.org.

But that's only part of it.

A large chunk of why this non-profit exists is because of a little girl named Charlotte Jennie who was born on July 9, 2005, seven years ago today.  SHE’S why this thing exists at all.

So many of you already know about Charlotte (CJ) that it seems ridiculously redundant to retell the story but what we will say is that because of this amazing, adorable, courageous, intelligent, curly-haired girl, and the way she charmed everyone she met (still seems to), we are moved to try and keep that energy moving forward.

It is very difficult to think that our little Monkey Butt would have just finished her second year of school, that she would now be swimming or going to camp, that we would be taking trips to see grandparents…

But that’s not the reality with which we’ve been entrusted.

The reality is that at any one time there might be upwards of 70 families of children receiving treatment on the 7^th floor of VCU/Children’s Hospital of Richmond and so many others moving through the various outpatient clinics.

The reality is that we just sent out 10 more Financial Assistance Grants totaling $5,000 and that just barely brought us even with demand FOR NOW.

The reality is that there are many, many other parents, grandparents, siblings, and caregivers all struggling to keep it together right now, at this very moment, through the worst nightmare imaginable.

The reality is that, because of Charlotte’s inspiration, upon which we draw every day, you have been moved to support our mission which, in turn, gives us a very strong coping mechanism allowing us to face each day as it comes.  Please believe it when we say that some days the act of getting out of bed seems like more than we can bear.

Today is one of those days.  But we WILL get out of bed because of Charlotte and what this Foundation has become to those who have built it and to those who have benefitted from it (some of the same people fit into both categories).

So Rachel will go to her first day of school at The Dominion School For Autism as principal and Roger will meet donors and do his show at WHAN Radio.  Many will raise a chocolate milk toast and watch Mary Poppins or Finding Nemo or Lady and the Tramp or one of her other favorite movies (she had several).  A listen to the Curious George Soundtrack is in order as well. Or giving "five" to Snook from "Big, Big World."

Hopefully all will be inspired to be more than they are right now and keep growing from there.

This is why we’re here.

Happy Birthday, Baby Girl.

From Laughter to WINE-ing and Back to Tears

First the laughter…

We definitely know that laughter is very therapeutic.  And slightly lucrative for non-profits. Rachel and I have become involved with ComedySportz Improv Theatre of Richmond and throughout the month of June, they let CJSTUF take over during halftime of every show in order to play “Stick The Butterfly To The Flower.”  People bought little paper butterflies with sticky dots on them for a few bucks and for some crazy reason, allowed us to blindfold them.  Then they tried to stick the butterflies to a big flower on the wall.  The butterfly that ended up closest to one of the numbers on the flower won a prize.

Just that little game garnered over $300 for CJSTUF.

On top of that, during the last weekend of June, $2 of every ticket for the Friday night and Saturday early shows were donated to CJSTUF.  We don’t have a final tally yet but we’re confident that overall, we raised enough to help one family.  Thanks ComedySpotrz!

Now for the WINE-ing…

This month, our Business Of The Month is really only it for one day but it’s a doosie!  Kate Hall over at RichmondMom.com has developed a tremendous relationship with the Wine Loft in Short Pump and the first Wednesday of every month is what’s called the Wine Down where a local non-profit benefits from ticket sales, raffles, and other donations.  They’ve raised as much as $900 during these events and the last time CJSTUF was the beneficiary of a Wine Down, it was the largest event they had had up to that point.  We’re hoping to set another record on the 11^th.  It is certainly possible because this year, an anonymous donor has offered to match donations if over $500 is raised at the event.  How's that for incentive?

Yeah, it’s not the first Wednesday but the whole July 4^th thing got in the way.

Tickets are $10 and include a raffle ticket (more available for $1 each), appetizers, and discounted wine.

The Wine Loft of Richmond is located at 4035 Whittall Way, Glen Allen, VA 23060 right next to Spirited Art (which just happens to have been our BOTM for May).  Festivities will get underway at 6:30 and you are strongly encouraged to arrive early.

Time for the BONUS ROUND!

Rachel has surpassed the 1200 vote mark in her quest to repeat as an Eagle Rare Life grant winner.  This year the grand prize has been increased to $30,000 to be donated to the charity of the winner’s choice and we feel confident that we can win it this year.  Last year’s secondary prize is helping to fund the new Lunch Bunch at MCV/Children’s Hospital Of Richmond for which CJSTUF has partnered with Connor’s Heroes Foundation and local restaurants to provide meals for the families of children receiving treatment on the 7^th floor of VCU’s Children’s Hospital of Richmond.  $30,000 would take care of a lot of meals.

People can vote once every 24 hours here.  Please set your alarms and spread the word.

So we come back to the tears.  It always seems to happen about every 6 months and July is very tough for us.  This 4^th of July weekend, we are traveling to Tennessee to visit my dad and have something of a small family reunion.  Rachel also has two book signings this weekend in Morristown at JavaGarden on Saturday and my dad’s church on Sunday (gotta take the opportunities when they happen).  Then we head back to Richmond to face the 9^th and think about our beautiful baby girl on her 7^th Birthday.

With every success that comes to CJSTUF, we are given a little solace.  The latest drop comes from knowing that because of Rachel’s initial book sales, we’ve been able to fund one family’s financial assistance grant.  That’s YOU, Network.  Because you have purchased books, because you voted Rachel into an Eagle Rare Life Award grant, because you donate what you can, when you can, we are able to fulfill our Mission which helps us to deal with things like July 9 and allows us think of Charlotte without curling up into

a fetal position.

And speaking of fulfilling the CJSTUF Mission, 10 Financial Assistance Grants totaling ($5,000) went out in the mail today.  You again.

So thank you for the world’s largest coping mechanism.  Thanks for just being there for us.

Don’t forget to love on your children.

I’ll take that glass of wine now.

CJSTUF Spotlight: Rachel Reynolds

Position: Executive Director, Co-Founder, CJ’s Mommy

Rachel Reynolds is originally from Daytona Beach, Florida where her mother, Gayellen, and stepfather, John, currently live.  She grew up listening to the roar emanating from Daytona International Speedway and working at her godmother’s hotel on the beach.

An exceptional student, Rachel participated in the International Baccalaureate program at Spruce Creek HighSchool in Port Orange and graduated second in her class.  She entered the University of Miami in Coral Gables as a Music Therapy Major and graduated with her Bachelor’s Degree in 1997.

While at “The U,” Rachel met a long-haired, wild dressing, authority bucking jazz vocal graduate student named Roger who eventually, somehow, talked her into marrying him and running away to Richmond, Virginia.  It just so happens that she conveniently had an internship waiting for her at the Virginia Treatment Center For Children so it worked out ok.

After two years in Richmond, they picked up stakes and moved to Boone, NC where Rachel started graduate studies in Speech Language Pathology at Appalachian State University.  After earning her Master’s, Virginia called again and they moved back; first to Fredericksburg and then finally to Ashland where they bought their first home and where they still reside.

Rachel began working at Commonwealth Autism Services in 2004, left in 2007 to run a small business, and returned to CAS in 2011.  She specializes in ABA Therapy and recently began her run as principal of The Dominion School For Autism.

Right in the middle of all that (2004 to be precise), Rachel found out she was pregnant and on July 9, 2005, gave birth to Charlotte Jennie Reynolds who became the center of Rachel’s life.  Charlotte was a beautiful, sweet (mostly), curly-haired little girl who learned quickly that “being adorable gets you stuff.” She had an amazing little voice that melted hearts and made everyone fall in love with her.  She was, indeed, very special.

In 2009, an ultimate burden was placed upon Rachel and Roger when CJ was diagnosed with a primitive neuroectodermal tumor (PNET) in her brain.  Rachel was pushed to the limit of what a parent should endure and was pushed past it when Charlotte lost her battle on January 7, 2005.

Despite the nightmare, Rachel has been able to continue her life, co-founding CJ’s Thumbs Up Foundation with Roger, acting as executive director.  And through the pain, she has retained her ability to laugh even so far as joining an improve comedy troupe in her tiny amount of spare time.  Because she knows, first hand, the healing power of laughter.

And so, through the sadness and tears, she can also smile as she answers “4-1/2 Questions.”

Four And A Half Questions:

1)      Q: What is your favorite food that you’ve never eaten?

A: Lobster

2)      Q: What is your day job?
A: Principal of The Dominion School For Autism/CAS

3)      Q: What is one of your favorite things about Charlotte?
A: Her laugh and her voice (which is technically 2 things but we’ll let it slide).

4)      Q: What is your top goal for CJSTUF.org?

A: Be recognized nationwide.

            ½)   Q: Wouldn’t it be cool if…
                        A: a celebrity played for CJSTUF on Jeopardy?

For more information on her journey through the world of pediatric cancer, check out her book: Four Seasons For Charlotte on Palari Books or follow her personal blog, I See What You Meme.

Oh! The Chafing!

At the risk of slighting those of you in the “over 21” age range, I am rarely inspired by grownups anymore.  Not that grownups don’t do amazing deeds all the time, it’s just that on average, those deeds pale in comparison to what “our kids” achieve daily.

Len on the road

                This weekend, I was inspired by a grown up.  His name is Len Forkas and he (along with many others) got on a bicycle in Oceanside, California and pedaled nearly 3,000 miles across the United States, all the way to Annapolis, Maryland in what was called the Race AcrossAmerica.  Not only that, he won his division (50-59 years old) and placed 10^th overall, edging out riders much younger than himself.

                Len had a bucket load of inspiration as he was using the event to fundraise for Hopecam.org, the non-profit organization he founded that connects homebound children undergoing treatment for cancer, and other life threatening illnesses, with their friends, families, and schools using laptops, high speed internet, and web cameras.

                Charlotte received a Hopecam notebook computer while she was undergoing treatment and we used it for Skyping, emailing, writing Caringbridge updates, and most importantly, for the Reading Vigil. We played recordings of friends/family reading books to CJ and people Skyped in from all over including our friend, Dr. Karen Massar who, while sitting in The Netherlands, read to Charlotte in Dutch.  It’s still one of the most beautiful things I’ve ever heard.

                One of the methods employed for keeping the purpose of the ride front and center (not to mention keeping Len pumped and focused), was to dedicate each day of his ride to one of the many children who have benefited from Hopecam’s endeavors.  On that day, Len would be read descriptions of the child as he rode. Charlotte got day 8 and a video dedication.

They also invited Rachel and me to Annapolis to be among the cheering crowd as Len crossed the finish line.  The wonderful people at Hopecam, including interim Executive Director Jennifer Bond, took very good care of us, paying for the room at The Doubletree Hotel and breakfast Sunday morning. When it became clear that Len was going to get in much later on Sunday then they had anticipated, they offered to pay for another night at the hotel so that we could stay and still see Len cross the “FINISH” line Sunday evening.

We didn’t mind since Annapolis is a beautiful town and was calling out to be explored by us. We figured we could leave early Monday morning in order to get Rachel to work in time.

So after a full day of walking, we settled at the courtyard into which the cyclists would be riding and waited.  There was a rather long time in between finishers which gave us time to network with people in the Hopecam crowd and with other riders’ crews.  One Canadian rider, nicknamed “The Hammer,” actually got hit by a car in Arizona yet was relatively uninjured and finished the race in ninth place overall.  One member of his crew had the torn up jersey he had been wearing at the time of the crash and waved it as he crossed the line.  There are many other stories and not nearly enough space.

Len hoisting his bike in celebration

We finally got word that Len was on his way and the large Hopecam crowd excitedly gathered around the finish line.  When he came around the corner in the dark with his various lights shining and blinking like a big rig on the highway, the crowd went nuts, us included.  When he got off that bike and immediately bent down to greet all the children who were assembled up front (and there were a LOT of them), it showed, even in his exhausted state, where his priorities lay.

Shannon

Soon, the emcee brought Len on stage to receive his medal, given to him by two time survivor and Hopecam beneficiary, Shannon Eastman.  Len wasted no time making sure everyone knew who the star of this event was.  “I just finished the toughest bike race in the world but it’s peanuts compared to what Shannon has had to do.” With Shannon standing close on the stage, he said, “I could stop at any time, Shannon couldn’t.  She had to finish.”

Throughout the evening, I found myself wondering over and over again, “How can I do something like this?”  It wouldn’t be easy.  Just thinking about the amount of time and effort it took to train Len, assemble the crew, plan who was going to do what and where, not to mention feeding everyone, is enough to make a lot of people quit before they even begin trying.

Roger, Len, and Rachel

But you know us; especially when we’re inspired.

Anyone wanna go for a bike ride?

Moving Forward

              

Our New Logo

Can’t do much else can we?  As Bruce Barton said, “When you are through changing, you are through.”  We’re hardwired to keep moving forward; to continually try to make our situation better even though sometimes all we do is repeat the mistakes of the past.  But move forward we must and that is what we’re doing here at CJ’s Thumbs Up Foundation (hopefully not with the whole repeating-past-mistakes thing).

Thanks to our generous Network (that’s YOU, generous reader) we’ve had a very good first half of the year.  Revenue is exceeding expectations due to increased donations, more successful fundraising events, and the release of Rachel’s book, Four Seasons ForCharlotte: A Parent’s Year With Pediatric Cancer.  It seems that so far, we have been doing things the correct way and our mission is being well-supported.

The Cover of Rachel's Book

                With all that in mind, it’s time to take some more baby steps forward.  This year, we will award a total of at least 25 financial assistance grants.  This almost doubles our impact from 2011 (so maybe “baby steps” is too conservative a term).  We also have plans to expand our Board of Directors and have welcomed some extremely capable members to the current board.  Our fundraising initiatives like the Butterfly Socials, the Thumbs Up Ball, and the Fall Art Auction continue to evolve into our primary annual events and we continue to seek ways to improve upon the last event’s success.

We are also modifying our online presence a bit.  In the near future, you will see more regular (weekly) blog posts covering various aspects of CJSTUF.org.  We are currently gathering stories and profiles of our Board of Directors, staff, local medical professionals, events, partnering non-profits, and most importantly, the reason we exist - our families.  We will spotlight these courageous families in an attempt to inspire the reader to do more, to dig deeper, or simply to help the healing process by making the families aware that they are not alone in their struggle.

You will soon be seeing small updates (in both look and function) to the website and social media outlets to include software upgrades, calendars, new widgets, and more efficient ways to keep up, and become involved, with CJSTUF.org.

One thing we are NOT changing is the mission.  We will also never forget the curly-haired, sweet-voiced little girl whose strength and courage is the inspiration for what we do every day. (We still miss you, Charlotte!)

It’s an exciting and bittersweet time for us here at CJ’s Thumbs Up Foundation as we continue to move forward, or as Jonathan Agin signs off of daughter Alexis’, Caringbridge posts, “…we are one day further, yet one day closer…”

We are so thankful to all who are helping us make unbearable situations a little more bearable.

Thumbs Up Campaign: Who Will Win?

The Thumbs Up Campaign is still going strong at many local Ashland businesses.  Have you seen the logo in some neighborhood storefronts lately?


Local Ashland businesses have volunteered to support the Thumbs Up Campaign.  Add a $1 (or more) donation to each transaction and 100% of the proceeds will benefit CJSTUF.  Each donor gets their name on a card which will be posted prominently in the business.

Current participating businesses include:
Pepicellis Pizza         208 S. Washington Highway, Ashland
NY Nails & Tan          107 N. Washington Highway (Ashland-Hanover Shopping Center)
Ashland Pack & Ship  225 N. Washington Highway (Ashland-Hanover Shopping Center)
Flower Depot           211 N. Washington Highway (Ashland-Hanover Shopping Center)
Cross Bros. Grocery   107 S. Railroad Avenue
Train Town Toy & Hobby 104 S. Railroad Avenue
1st Capital Bank-Ashland  409 S. Washington Highway, Ashland


100% of the proceeds will go to CJSTUF's programs, providing financial assistance to families in need.  The business that sells the most cards will win a team-building workshop from Comedy Sportz Improv Theater valued at $1500!


The Thumbs Up Campaign will be going on through May 31st.