Five Years: What it means

Five years.  A minor milestone kind of year.  Not usually worthy of a class reunion but to a five-year old kid, the fifth birthday is a biggie.  I still remember mine.

A few days after Charlotte Jennie’s death on January 7, 2010 from a Primitive Neuroectodermal Tumor (PNET), we received a letter in the mail from the State Corporation Commission notifying us that CJ’s Thumbs Up Foundation had been officially and legally incorporated.

The date of official incorporation was January 6, 2010.  The day before Charlotte died.

I HATE that CJSTUF exists.  I HATE that CJSTUF HAS to exist.  I HATE the reason we started down this path in the first place.  If I think about how much I hate all that for too long, that’s when my steering wheel begins to take a beating.

Some of the yummy food delivered by the Meal Fairies.
Some of the yummy food delivered by the Meal Fairies.

But without CJSTUF, all that support that was directed at us would have drifted away after Charlotte died.  The 180 grants we’ve sent out would not have helped our families at VCU and UVA Health Systems in their times of need.  We wouldn’t have served 10,000+ meals to the families and caregivers on the 7th floor of Children’s Hospital of Richmond and Ronald McDonald House Charities of Richmond.  We wouldn’t have been able to offer volunteer opportunities to children and adults alike.

We wouldn’t have been able to make a few unbearable situations just a little more bearable.

On top of all that, we wouldn’t have been able to meet the legion of amazing people who have come into our lives:  Our continuously energetic Board Of Directors, the other families with whom we have commiserated and from whom we’ve received such love, and the people–friend, family, and stranger alike–who have entrusted us with their hard-earned resources so that we may be able to continue the forward momentum of this great coping mechanism that we call “CJSTUF.”

At the risk of embarrassing her, we must hold high upon a pedestal our Managing Director, Michelle Alford, and her wonderful family. When we put out the call for applications to fill the newly created position of “Foundation Facilitator,” we had no earthly idea that out of the many talented and highly qualified applicants, we’d be introduced to the amazing Michelle Alford and her family.  Not only did she become an indispensable employee (who totally kicks heiney at what she does) but her entire family is now on the short list of who we call “close and trusted friends.”  And what with the impending adoption of our Kiddo, it’s so nice to have a “best friend” for her in the form of their eldest daughter.

Just a few of the many grants we have sent to families over the last five years.
Just a few of the many grants we have sent to families over the last five years.

Michelle has been a huge part of the growth and success of the Foundation and we hope she will choose to continue her journey with us for the foreseeable future.

Now, none of this will bring Charlotte Jennie back to us and this week is understandably one of great pain and heartache, but we really do find comfort in the fact that we are able to continue her legacy in the form of CJSTUF and that so many people seem to be rooting for us.

We are very thankful for all of those who will be lighting luminaries in Charlotte’s memory on January 7.  Let those lights continue to blaze in your hearts whenever the night seems darkest.

#Light4CJSTUF

Roger Reynolds
CJSTUF Director of Programs
CJ’s Daddy

Uplifting & Reflective

I sit here on the eve of a new year thinking about everything that has happened since 2010. As we approach the 5th anniversary of the founding of CJSTUF, we also mark the 5th year since Charlotte Jennie’s death from a brain tumor. In that way, January has become a time for profound reflection.

CJ_Annual_2013-coverI am grateful for all that we have been able to accomplish in five years.  As we noted in our 2013 Annual Report, we have provided support in the form of meals and financial assistance to thousands of individuals.  In 2014 alone, we fed over 4000 people through the Lunch Bunch program at Children’s Hospital of Richmond.  In 2015, we will distribute our 200th $500 financial assistance grant.  In 2014, we also expanded our reach to the Charlottesville area, providing assistance to over 20 families served by UVA Health Systems.

As our visibility in the community has grown, we have been given great opportunities to share our story and receive support from generous donors such as the Deep Run Marathon Dance, The Richmond Area Goddard Schools, and the many individual donors who helped us exceed our fundraising goals each year of participation in Richmond’s Amazing Raise.  As it has been from the start, these larger gifts grow from the efforts of just a few people. It is the Network…the friends and family who supported us in 2009…who have helped this vision become a reality. It is the expansion of the Network that helps our vision continue.

Unfortunately, this expansion and visibility in the community has also increased demand for our services. We currently have over 20 families waiting for financial assistance. While we were successful in raising the money for which we budgeted in 2014, our waiting list exceeds our means at this time. We are committed in 2015 to pursue grants and sponsorship funding that will help us achieve (and exceed) our financial goals. Our journey continues and our energy is renewed!

Each year in January, we look fBeth's pics 094or specific ways to honor Charlotte’s memory outside of donations to the foundation. At her memorial service in 2010, we released hundreds of pink and purple balloons into the sky. Watching those bouquets of color reach for the heavens, I was struck at her memorial service by the tangible symbol of support this portrayed. Much like the balloons in Pixar’s Up raised Carl’s home and saved it from imminent destruction, each balloon released by a member of our Network lifted our hearts and our spirits at a time when our grief left us heavy and burdened.  Every year since, we have honored Charlotte’s day of passing (January 7) by releasing a few balloons outside our home with a collection of close friends and family.

In this spirit, the work of the foundation lifts families. We can’t lift their entire house with our offering of help and hope, but we can lift a heart. We can lighten the load of a mother who has spent 10 days in the hospital at her daughter’s side by offering a hot meal. We can ease the worry of a family whose child is facing three years of leukemia treatment by putting $500 towards their mortgage this month.  

This year, we would like to mark the 5th anniversary of Charlotte’s death and the founding of CJSTUF in a slightly different way. Instead of releasing balloons, we are going to light candles. We hope you will join us. Much like the balloon analogy, when we light a candle, we provide a beacon to families in their time of darkness. Perhaps one candle cannot guide a steamship into a safe harbor, but it can lead one family out of the darkness. It can give warmth and guidance along the path for at least a few. And while one candle may not do much, think of the power that we all might have in lighting those candles together. Imagine the glow that 1000 candles could provide on a cold winter night.

Please join us on January 7th, honoring CJ in whatever way feels right to you. If you wish to share (especially on social media), please use the hashtag #Light4CJSTUF in your post. We are active on Facebook and Twitter (@cjstuf).

Thank you, Network, for always being there in our time of need. Everything the last five years has brought to CJSTUF is possible because of your generous spirit.

With love and peace,

Rachel Reynolds
CJSTUF Board Member & Co-Founder
CJ’s Mommy

 

Family Spotlight: The Hamiltons

CJSTUF caught up with one of our favorite grant recipient families, The Hamilton Family, to talk about how their lives have been impacted by their son Ethan’s diagnosis, treatment, and how CJSTUF has helped make their days just a tiny bit easier.  Even though life is never dull, Ethan’s mom Laura took some time out of her day to answer a few questions for us!

Ethan shares a smile!
Ethan shares a smile!

Can you summarize Ethan’s story for us?

Ethan was born 6 weeks premature with multiple birth defects. At the age of 3 months he had the first of 10 surgeries to repair urological birth defects.  After traveling to three different states, participating in 37 different genetic tests and being a patient at the National Institute of Health, a diagnosis of Mitochondrial Disease Complex I and ATR-X Syndrome was diagnosed.  Both diseases are rare and both limit your lifespan.

How did you learn about CJSTUF?

Our family followed Charlotte’s story through friends and social media.  We became aware of the foundation while attending a birthday party at Romp n Roll in Mechanicsville.  At the time Ethan was almost one and we decided to have a “Birthday Party for CJ”.  Instead of gifts we asked friends and family to make a donation to CJSTUF in honor of Ethan’s first year of life. We were honored to give back to the community but little did we know that one day we would end up benefiting from CJSTUF as a Financial Grant Recipient.

How do you feel CJSTUF has supported your family?

CJSTUF supported our family with financial assistance that allowed us to purchase an iPad.  The iPad has been used for comfort for Ethan during his many hospital visits and appointments. He also has been using it as a learning tool and has helped Ethan improve his communication skills.  Not only did the grant allow our family to purchase something for Ethan to help comfort him but it allowed us to do something for Ethan that was “fun”.  Children with chronic and life threatening illnesses often do not get “extras” because of the extremely high cost of healthcare including medications, equipment and hospital stays.  The grant allowed us to give Ethan a bit of sunshine in a time of dark clouds.

What do you think is the biggest challenge for a family of a child with a story like Ethan’s?

I would say the biggest challenge for a family like ours is dealing with the reality of what our life will be like in the future without our child while living in the present and enjoying the child we have today.

What would be one thing you wish people knew about CJSTUF?

I wish people knew how amazing Charlotte’s parents are.  Not because they had and lost a child with cancer but because out of the terrible pain and loss they made something so beautiful and helpful for other children and their families.

If you are interested in keeping up with Ethan and his family, you can “like” his Facebook Page called “Energy for Ethan.” 

Our Vision

Smiling CJOver the last four years, we have seen CJ’s Thumbs Up Foundation grow in amazing ways.  When we set out to start this organization, our mission was clear.  We wanted to honor Charlotte Jennie’s memory by serving families in their time of need.  We do this through meals (almost 3000 served this year alone) and financial assistance (about $50K given to over 100 families since 2010).  We are serving many needs of the Richmond, VA community and have exceeded our goals every year of our existence.

All of this is made possible through the leadership of our Board and Staff, the work of many volunteers, and the many donations (big and small) that come from YOU, our caring NETWORK.  As proud as we are of everything CJSTUF has accomplished, we are not content. Over the last year, our Board of Directors launched efforts towards a Strategic Plan that will help us go to the next level.

In September, our Board adopted the following Vision statement for our organization:

“We want CJSTUF to be the hub that connects families to

financial, educational, and emotional resources

while they manage their child’s illness.”

In order to accomplish this vision, we must continue the strategic expansion of our current programs while developing opportunities with new partners.

Here are some of the highlights for how we will grow in the coming months:

  • MealfairiesBeginning in 2014, CJSTUF will expand its efforts to serve the needs of families at UVA Health Systems in Charlottesville, VA.  This will start with financial assistance grants but we hope to expand the program with meals and other opportunities as the needs present.
  • As of December, I will step down from my position as Executive Director.  I won’t be going far from the organization.  I hope to continue serving CJSTUF as a Board Member or in other capacities.  Michelle Alford, our current Event Coordinator, will assume the role of Managing Director and Roger will continue to work for the foundation with the new title of Director of Programs. As key program staff for CJSTUF, Michelle and Roger can expand their roles in planning both fundraisers and program services for the organization.
  • We will continue to work with C4 and other Richmond area organizations to coordinate service delivery and support for families at Children’s Hospital of Richmond at VCU and Ronald McDonald House of Richmond through financial assistance, patient education, and our Meal Fairies program.

 

Thank you for helping us get this far. Thank you for helping us grow.  Thank you for helping us in our quest to achieve this vision.

Rachel Reynolds
Executive Director & Co-Founder CJSTUF
Mama to CJ

 

 

 

Meeting the need

When we set out to start CJSTUF, it was with the hope that we could capture some of the amazing energy that enveloped us during our time of need.  Roger and I knew what it felt like to be stuck in a hospital for days (or weeks) on end.  We knew about the financial stresses that grew out of chronic illness. We knew what it was like to rely on medical experts and advice for the health and well-being of your child.  At a time like that, everyone could use a helping hand.

Over the past three years, the community has responded with kindness and generosity beyond our wildest dreams.  We continue to support families in need through a quarterly distribution of financial assistance grants.  This past week, we sent seven more $500 grants to families in the greater Richmond community.

We know these grants are needed and welcomed.  Just before sending out the latest batch, I received a letter in the mail from a recipient of our first quarter grant distribution:

card“The financial blessing I received was truly heaven sent. I was down to my last and I had just called my sister, telling her I didn’t know how I was going to make it and I know the Lord heard my prayer! I have been unemployed since June 2011 and my mother’s cancer came back and I have been trying to run two households.  Every day I have been going back and forth to Richmond [a 90 minute drive]. Thanks again and may God bless you and your organization for helping someone such as me and my family. My son is doing well and we have not had any problems with the new heart.” –TB

Did you catch that? A new heart! This little 9-year old boy recently received a heart transplant and is also waiting for new kidneys as he fights end-stage renal disease.  So much for one family to take in!

As our support has grown, we have gone from a waiting list of over a dozen families in 2011 to meeting the need in our Greater Richmond area as we serve families who receive care at any Children’s Hospital of Richmond location.

Are we going to stop there? No way!  

I am excited to report that CJSTUF is getting ready to spread its wings and explore new territories! Before the end of the year, we hope to announce a new opportunity to reach out to families in a new geographic area of Virginia.  We can’t say more until we have official information but this is what we know for sure: we can’t do this alone.  We are meeting the need in the greater Richmond community thanks to your generosity.

 

 

 

A reminder of our mission

This week, I had the opportunity to give $4000 to families in need.  Thanks to the incredible generosity of our donors and supporters, CJ’s Thumbs Up Foundation has had a wonderful year.  At the December board meeting, our Board of Directors voted to award all eight families on the waiting list with Financial Assistance Grants.  

This means that, to date, CJSTUF has provided over 100 families with financial assistance, either through grants or emergency aid since its founding in January 2010.  These families face incredible challenges.  One child has a breathing tube and g-tube (feeding tube) and relies on round-the-clock care by her family and nursing support.  One girl is less than two years old and is facing multiple open-heart surgeries.  Half of the recipients are battling cancer, facing multiple hospitalizations with intensive medications and therapies.  

While $500 will not solve any family’s financial woes, that amount of money can make such a substantial difference.  These grants are providing assistance to pay utility bills and rent. One grant will help a family place a deposit on a new apartment.  They have been living with other family members for over a year.  These grants also help provide assurance to our families: they are not alone.  The community cares about their needs.  We are here to help. 

On a selfish note, these grants give me a way to pay it forward.  We keep Charlotte’s spirit alive through the work of the foundation.  Every time I write a check to these families and address their envelopes, I think of my own inspirational butterfly. 

Thank you for helping to make all of this possible. 

Rachel

Co-founder & Executive Director
CJSTUF




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.

The Challenge is On!

Earlier this month, we told you that we have thirteen families on the waiting list for Financial Assistance Grants. Today, we received an amazing challenge from a family that wishes to remain anonymous.


If we can raise $2000 before December 31st, the family will match the donation with an additional $2000.  That will allow us to give eight families on our waiting list a financial assistance grant before January!


You can find out more about the great things we have done this year by checking out our Annual Report for 2011.  With your help, we can continue our progress into 2012. 


Who’s up for the challenge? No donation is too small (or too big!)


Please donate using the special challenge badge on our website

“One G*# D*&#ed Chocolate Chip Cookie”

Or better yet, “That Damned Kiss.” – A Mighty Wind
Or slightly more diffused, “You know you’ve ruined it for me…” – Out Of Africa
We all have had events in our lives where one little detail eventually became more than just a detail in the overall fabric of our experience.  It morphed into an major element of the plot, influencing further development and screwing up your plan for where you thought you were going.  This butterfly did that to me:
A few days ago, Rachel came in the house and said, “Have you seen the new butterfly?”
We both went out and she showed me the purple butterfly that someone had covertly attached to Homer the Pine Tree overhanging CJ’s Butterfly Bush.  We occasionally find things on or around CJ left by people we didn’t see and they are always appreciated but I think I must have been in a certain frame of mind to receive this certain butterfly because it changed the course of my psyche.
Rachel and I had just come back from our vacation (it was fabulous, in case you hadn’t heard) and I wasn’t ready to get back into reality.  On top of that, I had been having lots of little “moments” that were weighing me down.  Moments brought on by the weirdest things.  Like hearing a song or being in a place where Charlotte had been. The bus was certainly back, parked squarely on my chest, and my “woe-is-me” song writing machine was picking up speed.  And a part of me was ready to stay on that path for a while. There’s value (at least to me) in feeling the pain.  At least when I feel the pain, I know I’m remembering her. (I hate “at leasts”)
And then I saw that damned butterfly.  It wasn’t like the weight was lifted or anything too dramatic like that but it reminded me that people are thinking of us, which is comforting, and that I need to get my head on straight.  It even altered the direction of one of the songs I had been working on for a long time.
The problem is that it was fixing to be a pretty good sad song before then.  Now it’s all confused and I may have to break it up into two different songs that sound a lot alike.
Be that as it may, the song writing machine (along with my attitude) has come out of its nose-dive and has leveled off for now.  The moments are still there, nothing has changed in that respect, but I’m at least able to deal with them for the time being.
Thanks to whoever placed that damned butterfly.
In other news, the Foundation is ending the year with both good and bad news.  The good news is that we were able to help 30 families, one way or another, to the tune of $14,000. That takes the total amount of aid since incorporation to around $27,000 in two years.  (We thought we were closer to $30K for a while but it still ain’t too shabby)
The bad news is that we still have 13 families on the waiting list.  That’s $6,500 if you want an amount.  We’re really hoping that some last minute fundraising opportunities will help narrow that gap.
One not-so-last-minute FUN-raiser is the Ukrop’s Monument Avenue 10K on March 31, 2012.  TEAM CJ will be in effect and there are different ways you can get involved:
1 – Join TEAM CJ, collect pledges, and run in the 10k.  If you commit to raising $500 or more, CJSTUF will give you a code to register for free!
2 – Go to MY fund raising page and make a pledge.  My goal for all of TEAM CJ is $10,000 but if I could do that personally, wouldn’t that be totally cool!?!  The Mother Runners are going to be involved somehow. We haven’t solidified details but there may be a pink running skirt involved! 🙂
3 – Be a cheer-er for TEAM CJ along the route.  We need spirit, we know we do! We need spirit, how about YOU!?!
By the way, there are new racing shirts (real running shirts!) for all Team CJ participants!
GO TEAM CJ!!!
January will also be “Remember CJ Month” when participating stores will be donating up to 5% of sales for the month to CJSTUF.  Our first participant will be the Bed Corner in Stonewall Square in Mechanicsville.  Come buy a bed or mattress in January and help CJSTUF!
If you own a business or know of one that would be interested in participating, have them contact us asap.
I think that’s all for now.  I’m sure Rachel will be back on with something I’ve forgotten.
Bye for now,
Roger
p.s. If you want me to explain the chocolate chip cookie reference, please let me know.

Got Pets?

CJSTUF is excited to announce our Business of the Month for June
Dr. Bob Magnus, The Housecall Vet
Our pets are important members of our family. They need regular care to stay healthy. Sometimes, however, scheduling visits with the vet can be a challenge. Enter Dr. Bob Magnus: The Housecall Vet.
Dr. Magnus (or Dr. Woof as he likes to be called) makes caring for your pets simple and affordable. As a concierge vet, he will come to your home to administer exams and vaccinations for all your 4-legged family members. 
Tigger enjoying his big backyard.
We recently made an appointment with Dr. Woof for our two cats, Tigger and Noah. In the past, we would have to make two separate appointments for the cats at the vet’s office due to the struggles involved getting them into their crates, working around other 4-legged patients, and dealing with their individual cat neuroses. This time, Dr. Woof came to us. He examined the cats in the comfort of our living room and administered their vaccines. Less than thirty minutes later, Tigger and Noah were enjoying their big backyard.  
You might imagine that a concierge service like this would be too expensive for most families but we found Dr. Woof’s services to be very affordable. We may have even paid less for Dr. Woof’s services than we did for our last vet visit. 
Noah, our diva cat. Now he’s going to demand housecalls.

Book your vet appointment with Dr. Woof during the month of June and 25% of your bill will directly benefit CJSTUF.  As an added bonus, Dr. Woof is currently offering his services FREE of charge to families effected by chronic and life-threatening illnesses.  If you know of a family that needs help caring for their 4-legged friends while also supporting a child with health challenges, contact us so we can put them in touch with Dr. Woof.

Thanks to The Housecall Vet for their support of CJSTUF. If your business would like to be featured as a CJSTUF business of the month, contact us so we can get you on the calendar.