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)

I haven't reported yet about our first official Charley's Fund event, which took place in Rumson, NJ on June 13. It was a strange and surreal day for us, our first foray into the public arena. Until that day, we had kept our cause in the family, so to speak. Although we reached pretty far and wide, everything we did was by word of mouth. We appealed for help to friends, relatives and business associates. We contacted college buddies we hadn't spoken to in years, we dug up the names and addresses of coworkers from long-ago jobs, we sent e-mails to all the parents of our children's classmates. Even when we received a donation or a web page "hit" from an unfamiliar name, we were sure the person found out about us from a person we know, or someone we knew at some point in our lives.

The New Jersey event marked a big change for us by opening ourselves and our cause to the public. For the first time since Charley's diagnosis, Benjy and I were interviewed by several local newspapers. Charley's photo appeared next to the articles. On the downside, this shift out of our private world made the whole scene so much more real. To be positive, the exposure helped get the word out about Duchenne to people we never would have reached otherwise. Just the other day I received a donation from a New Jersey woman who read about Charley's Fund in her local newspaper.

The event itself was really unique. Charley's uncle, who lives in Rumson, knows one of the coaches of the England World Cup Women's Lacrosse Team. This summer, while the team was visiting the United States for a tournament, he convinced them to host a lacrosse skills clinic for girls in grades 3-8. More than 75 girls signed up to play with the English coaches. It was a fabulous -- albeit stiflingly hot -- day. The coaches were upbeat and fun, and the participants seemed to have a great time as well as learn something from the clinic. (There was even a bit of British trivia being thrown around!)

The day was filled with stories of people who went out of their way to help, such as...

1. the English coaches who threw their utmost energy and enthusiasm into the clinic
2. a casual acquaintance of Charley's uncle who heard what we were doing and wrote a check for $1,000 on the spot
3. the manager of Athlete's Alley who donated prizes\r\n4. the caterer who sent over huge platters of goodies to feed the hungry athletes

We are grateful to many other people who helped make this event happen. In particular:
1. Head Coach Lois Richardson and Goalkeeping Coach Annie Richards
2. John Hird, the Director of Recreation in Rumson
3. Audra Green from Pfizer, a corporate sponsor of the event
4. Meridien Health, who donated backpacks
5. Rob Lavin, who donated water bottles
6. Diane and Mickey Gooch and Judy Alvarez at The Two River Times
7. Suzette O'Brien of Gourmet Picnic in Fair Haven, NJ
8. Diana Milkowski, Nancy Bach, Ann Jordan, Peter Richardson, Kerry Chandler, and Emily and Robert Godlberg for pitching in to help out.

Most of all, we are grateful to Rocky, Betsy, Sofia, Hana, Stanley and Lucas for brainstorming and planning the event. It just goes to show that -- with a little creativity -- anyone can help raise money for our cause. The lacrosse clinic brought us $5,000 closer to our goal.

At the end of August, friends up here in the Berkshires are hosting a dinner party in their home for 50 friends. Benjy and I will give a presentation and then we will all relax, eat, and enjoy the night. In November, we are heading to San Francisco to do a similar evening for a whole new crowd. This is another great way to spread news of Charley's Fund and Duchenne Muscular Dystrophy beyond our own circle of friends and family. If you are interested in hosting a cocktail party or a dinner, please let us know. We will be happy to oblige!!

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

It's been three weeks since the DMD conference in Cincinnati, and I am still reeling from the onslaught of information. I was expecting an intense academic experience. I arrived with several notebooks, a list of questions for different scientists and physicians, and a plan for which breakout sessions to attend (with backups in case our first choices weren't helpful). Even with this preparation, my brain was still tied up in knots from the two long days of highly scientific presentations.

To look on the bright side (which I still try to do), it's good that there was so much to say. The hot topic of the weekend was definitely exon skipping. Several researchers presented their work in this area, and the general consensus was that exon skipping currently represents our best hope for children with DMD. That made us feel good about our decision to fund research in this area.

Many presenters discussed other approaches to a cure or treatment for DMD. Depressingly, some work is turning up dead ends. Stem cell research does not appear to be progressing toward a viable treatment for muscular dystrophy at this time. However, small molecule drug discovery and gene replacement therapy show serious potential. We plan to fund research into these areas in the near future.

One thing I was not prepared for was the emotional turmoil I experienced at the conference. I arrived at the meeting somewhat excited, bizarre as that may sound. I was with my husband on a child-free trip (except for baby Maisy, who is with me 24/7). We spent the plane ride strategizing for the conference. We planned our attack for the small-group sessions to make sure we covered every topic we wanted to learn about, and we listed the names of scientists, researchers, and parents we needed to meet. Upon arrival in Cincinnati, we took a taxi to the hotel through the city, which always gives me a shot of adrenaline (ever since I moved to the country). I felt like I was attending a high-powered business meeting.

When we entered the hotel lobby, I quickly crashed. Many families were getting there at the same time, and I was not expecting to see so many children with DMD. There were boys who look just like Charley: darting in and out of the elevator with their siblings, enjoying the excitement of a new place. There were kids who are clearly slowing down, with the tell-tale lordotic stance (curved spine) and irregular gait. And there were boys in wheelchairs, who needed help with everything from opening the doors to cutting their food. Seeing this range of DMD children put it all together for me: my child is very sick.

Although I have devoted my life to finding a cure for Duchenne, a part of me still believes that Charley is okay. Whenever I pick him up from a playdate, I fish around for information from the parents. I always hope they say, "I can't believe he has muscular dystrophy. You would never know it. He seems so active." These words help me believe that Charley is "and will always be" fine. Seeing all those kids at the conference was a punch in the stomach, temporarily knocking me off my feet but ultimately revving me up for action.

So that explains why it's been three weeks since my last blog entry. I have been spending every minute working on the fund, trying to raise money. We have three fundraising events coming up:
Gems for Duchenne, a cocktail party/jewelry auction on Sept. 10 in Lenox, MA
A dinner party at the home of a close family friend.
A David Grover concert for families on May 14 in New York City.

Please check our events page to learn more about these fundraisers.

I always like to end on a positive note, so here's a story. Yesterday I received a call from the printer who does our letterhead.
"We have a problem," she warned.
"What else is new?" I thought.
"You have so many Founding Supporters that they won't all fit on the page," she explained.
Now that's a problem I can deal with.

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

Hands down, the highlight of my day is going to the mailbox. Mornings here in the Seckler household are totally chaotic. I have a crazy hour of changing, feeding, and bathing Maisy; making breakfast for the boys; trying to come up with novel ways to get Charley to down his "muscle drink;" and then hurrying the kids out the door so the boys can get to camp on time. Once Sammy and Charley are safely deposited at Camp Eisner, I head right for the post office.

Lately it seems as though something uplifting is always waiting there for me. Today it was a packet of checks from the Philip family in Wayland, MA. For Nikki Philip's recent birthday party, she asked her guests to donate to Charley's Fund in lieu of bringing a gift. The invitees were happy to give to a good cause. Everyone brought checks, ranging in amount from $100 to $20. Nikki's parents generously matched the gift checks. They also bought Charley Pops to give out as party favors. Charley Pops are delicious lollipops tied with a tag that explains what Charley's Fund is and why we need to raise money ($5/bunch). From a simple birthday party, Nikki raised $1,250!!

A benefit of living in the high-tech age is that I get to check the mail all day long. I check my e-mail several times thoughout the day, and there is often an encouraging word from a well-wisher or news of an on-line donation. Recently I received this message in my in-box:

Hi Mrs. Seckler and Family,
It's Marina Lane from your 6th grade English class. At first I didn't really understand about the disease, but now I do, compliments of your website. I enjoyed the pictures of Charley scattered on the website, and hope that he can remain that happy all of his life. If I had money to give to the fund, I would, but I dont't.

So I've been thinking of ways to help support Charley's fund, and I since I am going to Lenox high school next year, maybe I can attempt to expose the children and parents at Lenox about this disease and the progress of its reasearch. I'd love to help in anyway I can.

I will tell my friends to visit your site, so they can have the same benefit as I did. I also know that many of them live in different places, and maybe they can expose people around them to the facts about DMD also.

Hope I can help.

Sincerely,
Marina Lane

P.S. One way that I can help if you ever need it, I can babysit for no cost. I'd love to meet Sammy, Charley, and Maisy and really get to know them.

I got in touch with Marina, and she is going to get a bunch of friends together to package more Charley Pops so we can sell them around town and on the website. For now, call me at home (413) 528-5745 or e-mail me (info@charleysfund.org) to order Charley Pops.

More good news came last week from my nephew Jeremy (once again, via e-mail). His sixth-grade friends Carlyn Shear and Annabel Edelson set up a lemonade stand on Park Avenue, complete with signs and information about Charley's Fund. They raised $320 in one afternoon, and spread the word to hundreds of passersby on the Upper East Side. Another young friend, Charlotte Borner, has asked her bat-mitzvah guests to donate to Charley's Fund instead of bringing a gift.

I have found that adolescents and teenagers are very eager to help Charley and other boys suffering from DMD. If you have a "tween," please share the Charley's Fund website with him or her. Although the truth about Duchenne is upsetting, kids seem to have a universal desire to do what they can to help. A great way to raise money is to ask for donations in lieu of gifts to bar-mitzvahs, birthday parties, weddings, and other celebrations. We have printed adorable post cards to alert the honoree that a donation has been made in his/her honor.

Tomorrow Benjy and I leave for the annual Parent Project Muscular Dystrophy conference in Cincinatti, OH. This is an impressive gathering of many of the top physicians and scientists who are experts in the field of Duchenne Muscular Dystrophy. There will be workshops ranging from stretching your child to breaking social isolation to potential therapies. We are expecting two and half days of intense education; we will report back on what we learned when we return. When the conference is over, we are taking the kids to Martha's Vineyard for a week-long vacation. This combo-trip embodies our approach to life: work for a better future, but remember to live the present to its fullest.

Posted by Tracy Kramer Seckler at 2:37 PM | Permalink | Comments (1)

Most people who know us ask two questions. How is Charley? and How much money have you raised? I've addressed the latter in my blog and on the website, but I haven't really said much in response to the former. It's so important -- and therapeutic -- for us to focus on the potential of the future. So we don't usually go into detail about how Duchenne is affecting Charley every day of his life. But it is important for people to know how the disease is already straining Charley and our entire family.

Most casual obervers do not notice anything amiss with Charley. For the moment, he can run and jump and play with his friends. However, if you know what to look for, the tell-tale signs of Duchenne are quite obvious. When Charley gets up off the floor from a sitting position, he uses his arms to help him. He needs a push to climb up onto his bed or into the car. He tires easily, and often has to be carried if we are walking long distances. Charley's calves are "pseudo-hypertrophied," which means that although they appear to be very muscular, the muscles are actually being replaced by inflammatory and scar tissue.

Charley's muscles need to be stretched twice a day to combat the contractures that result from muscle damage and scarring. We stretch him for 15-20 minutes every night. His teachers and physical therapist do the daytime stretches at school. In addition to this special service, Charley visits an occupationl therapist to build upper body strength and fine motor skils. He also sees a speech and language pathologist twice a week to help him overcome the relatively mild cognitive issues associated with Duchenne. The pathologist helps Charley with word retrieval, sentence formation, understanding directions, and other language weaknesses.

Charley swallows six pills a day and downs a pretty potent "muscle drink." The cocktail is a combination of muscle-building and energy-enhancing supplements that we hope will retain muscle function for as long as possible. Among the pills are green tea extract, a multi-vitamin, a calcium supplement and essential fatty acids. Since there is much controversy in the medical arena regarding treatment for Duchenne, we created this "menu" by talking to doctors, nutritionists, and other parents of children with DMD. Charley also takes daily steroids, which is the only medication that doctors agree can slow the progression of DMD.

Because steroids are often associated with weight gain and water retention, Charley is on a low-sodium, low-fat, low-sugar diet. We've cleared out the chicken nuggets, fish sticks, and hot dogs and we limit pizza and other high-fat foods to special occasions.

At night Charley wears his "Spiderman boots," which are really braces to help delay contractures. We need to be more vigilant with the boots. Many nights, once we have argued with him over the drink and the stretches, we are too exhausted to push him into one more thing.

On a positive note, we've signed Charley up for day camp this summer. He'll be attending Eisner Camp in Great Barrington with his brother Sammy and many of his friends. The camp staff has been incredibly supportive and flexible so far. They are providing a one-on-one counselor to keep a close eye on Charley since he is more prone to breaking a bone than other children and because he tires out so easily. We are so grateful that the camp is working with us to help Charley enjoy summer camp like every other kid.

Charley gets his cast off on Thursday, so if all goes well he will be all set for his first week of camp. This week, we are enjoying a family vacation together. We're playing wiffle ball in the front yard, going to see Shark Boy and Lava Girl, and just hanging out. Benjy and I are also spending lots of time this week on the Fund. He is working out the specifics of our first two research projects, and I am looking for money!

Thanks so much for asking how Charley is doing. The question reminds us how much he is loved, and how much people care about his well-being.

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

I am truly amazed at the power of the internet. Our website has made its way to so many people, including old camp friends, friends-of-friends, and random web surfers. The responses continue to put a smile on our faces, which is incredible because as recently as one year ago, we thought we would never smile again. We are eternally indebted to Studio Two in Lenox, MA, the talented and generous creators of our website.

Many friends are taking advantage of the internet to help us. This morning, Debby Freedman Belt e-mailed a cover letter and a link to our website to all of her friends and acquaintances. Within fifteen minutes she raised $750!! If you would like a copy of this cover letter, please e-mail me at: info@charleysfund.org.

It's good to know that the old-fashioned methods of fundraising are still effective. Annabel Edelson, a friend of my nephew, pounded the pavement selling Charley Pops (coming soon to the "shop" section of our website). She also set up a lemonade stand with her friends from the Spence school. Using these age-old tactics, Annabel raised over two hundred dollars and helped spread awareness about Duchenne Muscular Dystrophy.

Karen and Ted Philip, close friends of my sister, had another great idea. Their daughter Nikki is having a birthday party next week. Nikki sent a letter to all of her invited guests asking them to bring a check for Charley's Fund in lieu of gifts. Karen and Ted have offered to match whatever Nikki raises. They also ordered bunches of Charley Pops for the goody bags.

All of these ideas -- from the traditional to the cutting-edge -- are fantastic ways to get the word out and raise money for the exciting research that could lead to a cure or treatment for DMD.

Yesterday evening, at a school picnic, I watched Charley run around and play with his friends. He was right in there playing hide-and-seek in the woods, jumping off rocks, and pushing his way to front of the cake line (all of this with a broken elbow, no less). All I could think about was how amazing it would be if he never had to sit out of the activities that he loves so much. If I could freeze time, I would live in this moment forever. But since that isn't possible, I need to focus my energy on what IS possible. Moving the research to a faster timeline is something we can accomplish with your help. Please continue to come up with ideas that will help us fund the research to make a real difference in Charley's life and the lives of all the other kids who have so unfairly been hit with this awful diagnosis.

Thank you, thank you, thank you.

Posted by Tracy Kramer Seckler at 9:46 AM | Permalink | Comments (0)

Hello and welcome to my blog. I am Charley's mom. Every few days I will write in this journal to give you the most up-to-date information about Charley's Fund. I will report on fundraising, research projects, and news about Charley.

This first entry is not about Charley, however. It is about the people who have made Charley's Fund a reality: our supporters. We are incredibly grateful to the many friends and family members who have given so generously to get Charley's Fund off to a very strong start. Many people have given whatever they could -- financially and otherwise -- to help us get the foundation going as fast as possible. They know that we are racing against the clock, and they did not hesitate to write very large checks, to stuff envelopes all night long, to lend their expertise with editing or web design or legalese. Thank you to everyone who pitched in right from the start.

Thanks to your help, in just six months we have raised almost half a million dollars. This is a fantastic accomplishment, but we have no time to rest. This year we are aiming to raise $800,000 to fund some very exciting research that could have a major impact on Charley's prognosis. Helping us reach this goal is even easier now that we accept on-line payments. Just click on Donate and you can use a credit card to make a contribution.

Please remember that every little bit does help. If you are skeptical, take the case of a thirteen year old girl named Sam Kaplan, who recently proved that old saying to be true. A month before her bat-mitzvah, Sam sent a letter to all of her invitees telling them about Charley and asking them to donate $10 to Charley's Fund. So far, Sam has raised close to $5,000...and the checks are still coming in.

The past six months have brought other heart-warming stories. Long-lost college friends became Founding Supporters of Charley's Fund without a moment's hesitation. A few of Sammy's kindergarten classmates emptied their piggy banks and donated the contents "to help Sammy's brother get better" (in the words of one six-year-old girl). Charley's older cousins and several of my former students raised hundreds of dollars selling lollipops and bracelets.

These are just a few anecdotes that represent how giving people have been since they heard about Charley's diagnosis. We are indescribably grateful to everyone who has contributed time, money, or expertise to our grass-roots effort to fund a cure for Duchenne.

We hope you will check this blog regularly to follow the news about Charley and the Fund. We believe that we can push this research along to benefit Charley and other young boys who are afflicted with DMD. Thank you for your help.

Posted by Tracy Kramer Seckler at 9:03 PM | Permalink | Comments (0)