Updates from Charley's Mom

Two young people we know recently came up with terrific ways to help Charley's Fund. Not only are these kids raising money and awareness, but hopefully their ideas will inspire copycats. If you are a parent, please share this entry with your tween or teen. Young people seem to truly believe that their actions can make a difference, and we really need this inspiration!

Idea #1
The first young man is Joey Wein of New York City (14 years old.) This e-mail we received from him earlier this month explains it all:

9/5/05 Benjamin and Tracy, I know we have met before, but I would like to re-introduce myself. My name is Joey Wein, I am 14 years old, and I am Charlotte and Ruth's cousin. About a month ago I decided to register for the Boston Triathlon. This was my first triathlon and I thought it would be great to try to raise money for Charley's Fund. So, I collected pledges from friends and family, which I would receive if I completed the half-mile swim, 12.5-mile bike race, and 3.1 mile run. This past Sunday on September 4th, I completed the race in 1 hour 18 minutes and 28 seconds and have received promises for $1150 to Charley's Fund. I am proud to have raised this money for Muscular Dystrophy and would love to see a cure discovered to save Charley and all others suffering from Duchenne Muscular Dystrophy.

I was also wondering if it would be okay with you if I printed "Charley's Fund" on my racing singlet for future races in order to spread awareness to spectators.

It was my pleasure to contribute in finding a cure for Charley.

Joey Wein

Idea #2
Nick Herbst, around the same age as Joey, is also pounding the pavement to help Charley's Fund. Nick is furiously bunching "bouquets" of Charley Pops and selling them to stores in his neighborhood. He is asking each store to purchase five bunches of pops, for a total of $20. In the best case scenario, the store sells the pops to customers and helps spread the word about our efforts to cure Duchenne Muscular Dystrophy. At the very worst, the store owner has donated $20 to our cause and can give the pops to friends and family.

This is a fantastic project that can be done anywhere. Think how wonderful it would be for Charley Pops to appear in stores all over the country! Each bouquet comes with a tag that explains what Charley's Fund is and has a note from Charley himself. If you are interested in selling Charley Pops to stores in your neighborhood, please e-mail us at info@charleysfund.org. We will send you all the materials you need to assemble the bunches and get on the move.

If you have an idea of your own, please submit a comment to this blog entry. We know there are so many people out there who want to help, but who just don't know what to do. Let's use Joey and Nick as inspiration to begin a list of ideas that people can choose from. Anyone can do these projects for a school community service requirement, a bar-mitzvah project, or just to perform a mitzvah. Thank you Joey and Nick for getting the ball rolling!

Posted by Tracy Kramer Seckler at 2:37 PM | Permalink | Comments (0)

Shortly after Charley was diagnosed with DMD, we realized that scientific research was our only hope for a better prognosis. Currently, there is no effective treatment or cure for the disease, so we would have to rely on the promise of experiments being conducted in labs around the world. Bringing a new therapy to market can cost tens of millions of dollars, so as soon as we started Charley's Fund Benjy and I began brainstorming ideas on how to raise money. I remember sitting in the car one day last summer and passing a nearby inn that is owned by our neighbors. The thought of holding an event there must have crossed Benjy's mind because he asked me, "Can you imagine throwing a party for such a sad reason?" No, at that point I could not imagine putting a smile on my face, sampling hors d'ouvres, and chatting it up with guests, even if in the end it was going to help move the research forward.

But here we are a year later, reflecting on the amazing event we hosted on Saturday, Sept. 10: Gems for Duchenne. Yes, it was a party. The parking lot was stuffed and the fabulous barn at Stonover Farm was humming with people. As I looked around the room, I saw an inspiring combination of old friends, new friends, and people I have never seen before in my life. The cocktail party/jewelry auction raised $55,000, and the total continues to rise as we sell the leftover jewelry and collect donations in honor of the event.

In one short year, how did we get to a place we never thought we'd be able to reach? Two factors propelled us toward this incredible night. First, the promise of the research. We hold in our hands a real chance to make a difference, and this knowledge drives us to raise money relentlessly. Second, the support of the community. As we planned Gems for Duchenne, it seemed like everyone around us wanted to help in whatever way they could. The community was rallied by my friend Maria Sirois, who thought of the idea for a jewelry auction and spearheaded the entire effort. Legions of helpers gave up their free time to stuff invitations, pick up supplies, polish jewelry, clean up the barn, and engage in a whole bunch of other tedious tasks. Jewelry designers, retailers, and friends donated boxes of jewelry, from strands of plastic beads to 18 karat gold necklaces and sparkling diamond rings.

• Suky and Tom Werman of Stonover Farm generously offered up their incredible barn, which was the perfect place for a Berkshire party.
• Jeff Taylor of Taylor and Miller Architecture and Design built The Giving Tree to display the Charley's Fund Believe bracelets.
• Dish, Domaney's, Nejaimes, and Spirit Shoppe donated all of the liquor.
• Firefly practically gave away the food.
• Berkshire Flower Company adorned the barn with rustic sunflowers and tall grasses.
• The Photo Shop in Pittsfield donated stunning poster-size prints of Charley to hang on the barn walls.
• At the last minute, Pine Cone Hill came through with 80 yards of much-needed fabric.
• Netkaleidoscope/Great Greeting Cards and Masterpiece Printing designed and printed the beautiful invitations for free.
• Classical Tent provided tables, chairs, linens, glasses and plates at a ridculously low price.
• Home Depot loaned us sawhorses, on which we displayed the jewelry.
• Paul Rich and Sons Furniture delivered the sawhorses at no charge.
• Computer Whiz Matt Mervis hooked us up with the technology to project photos of the live auction items.
• And I don't know how she did it, but Judy Usow managed all of the resgistration, bidding, and checkout without ONE foul-up.

By all accounts, the night was a huge success. Guests were treated to terrific deals on jewelry, and Charley's Fund raised a great deal of money. Despite this good karma, as always in our lives, there was an undertow of sadness tugging at our hearts. Posing for a photo or hugging a friend hello, I would get carried away with the glamour of it all and then suddenly realize, "This is not a wedding." But it was a party, and we were there -- and we smiled, ate hors d'ouvres, chatted with guests, and helped move the research forward.

In fact, the evening's proceeds fully paid for a mouse model that is being created for Charley's Fund. The mouse will mimic Charley's genetic mutation. Scientists will use this mouse to test exon skipping. Because the mouse will have Charley's exact genetic mutation, it will be an important predictor of whether exon skipping can work on Charley and other boys with exon 51 deletion, a genetic mutation that causes Duchenne Muscular Dystrophy. We recently received this e-mail from the researcher who is creating the mouse:

Hello Benjamin,

I hadn't heard back from you about your discussions with the legal folks here. That's not really why I am writing you. I took the liberty of checking out the web-page for Charley's Fund and was quite touched by your predicament. I have 2 boys of my own and, given the situation, it struck me quite hard that time is not on our side if we are to help him. I don't care about the funds at this point. We will work that out. I will waste no more time. For that reason, I initiated the project today. I have assigned my best technician to make the gene targeting vector (though we will all pitch in). After I described the problem to him, he was overwhelmed with honor at being asked to pursue such a noble endeavor. I can personally assure you that, of everyone I know, he is the person who can make this vector as fast as is humanly possible. It is a fairly complicated gene modification to make... Today, I designed the vector and we are on the move. I will do whatever I can to get this done. Anyway, I just wanted to let you know that there will be no more delays. Charley and many other children are too important for me to wait any longer.

Take care,
Randy

And so I continue my practice of always ending on a positive note.

Posted by Tracy Kramer Seckler at 2:37 PM | Permalink | Comments (0)

I must admit, the subject of this blog arises from dual motives, one completely legitimate and the other not so pure. Instead of crafting my own original entry, I am reprinting excerpts from letters I have received from friends and relatives. To come clean right away, I am utterly and thoroughly exhausted, which is one of the reasons I am letting others do the work for me today.

The other reason I am substituting my own writing for that of our supporters is because I want you all to know how moved we are by your kind words. These notes mean every bit as much to us as the checks that were enclosed in the envelopes. Thank you to every one of you who has taken the time to put an encouraging word to paper. You have no idea how much these letters inspire us to carry on. We keep them all, and take them out to read them every once in a while.

So thanks on two counts: for saving me the effort of coming up with an original blog entry, and for giving me a lasting gift that will continue to inspire us for as long as we are forced to fight this battle.

Aug. 24, 2005
Dear Benjamin and Tracy,
I've been reviewing my track record for wishes to come true. So far, I've been very good at it. Now, this is my latest wish. Within my lifetime, and I'm now 98, a cure for MD will be discovered and little Charley and others like him will be cured and able to live a long happy life.

All my love,
Glenna

Aug. 8, 2005 Dear Tracy and Benjy, I received your recent e-mail during a busy day at work. I stopped what I was doing to look through your website. As I focused on the picture of your three children, tears started rolling down my face as I considered your pain and the joy of what you might accomplish. God has put you and Charley on this earth to find a cure for DMD. Andrea and I are contributing $10,000 to your fight and praying for your success.

Much love,
Nick Chermayeff

April 12, 2005 Dear Tracy and Benjy, My wife, Valerie, and I send you our hopes and wishes that your efforts for Charley will bring new effective treatments that will benefit Charley and other children afflicted with DMD. I am reminded that today is the 60th anniversary since the death of FDR. As you know he contracted polio and nearly died of the disease. When I was growing up polio was a mysterious infection with no cure and no way to prevent, except not to be in public places all summer. It was terrible for kids and their parents. And 50 years ago today, the Salk vaccine was officially recognized as an effective method to prevent polio. It was a miracle. Let us hope that with research new understanding may soon provide a cure for Charley.

Allen Hyman MD

Dear Tracy, It is wonderful how much you have done for your amazing Charley. The research projects sound hopeful. The website is extremely well done. We just received your "update" letter. What a phenomenal tribute to you, your family, and most of all, Charley. To say he's a trooper is the understatement of all time....

Please count on me/our family to pray for Charley and continue to help in any way we can. You are a real inspiration.

Warmest regards,
Cynthia Austrian Weber

And at the bottom of our monthly lawn-mowing bill:

Please make Aug. check out to Charley's Fund in the name of Craig and Donna Faedi. Thank you and good luck.

Posted by Tracy Kramer Seckler at 2:37 PM | Permalink | Comments (0)