Monthly Archives: January 2010

>Global Genes Project

>The Joubert Syndrome Foundation is working with the Global Genes Project to help raise money and awareness for Joubert Syndrome and other rare diseases. The Global Genes Project is a grassroots effort with a simple goal: Increase awareness for the prevalence of rare diseases and help those affected by them. GGP is using a clever play on words Genes = Jeans in their campaign. They are asking people to host jeans themed events or use jeans in some form to help with the fund raising effort. GGP is just a platform to help us raise money for the charity of our choice….of course, mine being the JSRDF. All of this is leading up to World Rare Disease Day which is February 28th. A couple people have started making denim ribbons and the denim ribbon has become like the pink breast cancer awareness ribbon for rare disease awareness. So I got my crafty cap on yesterday and started ripping up some of Will’s old jeans (shhhhh!!!! don’t tell Will), and came up with this prototype.

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I’m going to sell the ribbons for a $1 donation (or more if someone feels the urge to donate more). So if you would like one, there is a button on the right side of this page, directions for donations are listed, or if you see me out and about I will have some ribbons with me and will take donations, or you can mail me donations. I’m going to be wearing mine as much as possible. It kinda stands out and people notice it and will ask about it (I hope!) The websites for the JSRDF and GGP are on the back of the ribbon also. Although I’m kinda using the Genes Project to promote J4JS this is really something entirely separate and unrelated, and the denim ribbons are kinda fun to make. But in the end it really doesn’t matter who raises the money, it is all going to the same place…..100% to the JSRDF.

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>This Week’s Happenings

>Well, the whole Buchanan household is down with strep throat…..ICK, which unfortunately means no-go for running for a few days…….exactly what we didn’t need!!!! But the time off work has given me more time to work on J4JS. I heard back from one of the blog designers that I contacted about donating their time to help me with remodeling the blog. Super sweet and super talented, she has some really cute blog designs, and she also does print stuff too like announcements and invitations. Go visit her at Krizzy Designs.

I also got a great idea from a new bloggy friend over at Run Faster Mommy. She runs for Team Fight another running charity. She put together a basket of running goodies that she is raffling off tomorrow. So far she has raised over $1000 just with the raffle. So I have been emailing different companies asking them to donate products in exchange for ad placement on the blog. So stay tuned for developments with that.

I am also trying to really network in the bloggy world, especially with other running blog writers to help get more traffic to the blog and in turn more attention to the J4JS cause. I know there are more than 6 people that follow this blog, but that is all that are signed up under the “followers”. I have heard from a few people that Blogger makes it a kinda difficult process to sign up as a follower, but if you could spare just a few minutes to do so. Not only does it make me feel good as a blog writer to know I have followers (sad I know) but the more blog followers you have the more seriously people take you.

On the running front, Will and I found a new place to run that is practically in our back yard….and we never even knew about it. Its the Biggerstaff Park in Dallas. Its a huge park, 100 some acres with an equestrian park, lakes, several shelters, and a playground for the kids. I guess I never gave it much thought because it is located right by the jail and animal shelter, two areas that don’t scream “great place to run and play” but it is a really nice and beautiful place. The running trail we ran was little less than a mile long but has a killer hill which definitely helps with the hill training we need for the Bridge Run. We were scheduled to run our long run for the week on Saturday which was 4 miles. I was worried that I wouldn’t make it the whole way. I haven’t run 4 miles straight in a loooong time. We decided to walk the trail once to let the GPS tell us how long it was and when I saw the hill I got really worried about not being able to go the distance. But I was so proud of myself, I ran the WHOLE thing!!!! Now, granted it was super slow at around an 11 minute mile (where I’ve been running around 9:30 on flat ground, still slow but better than 11 LOL). This was the first time that I actually felt like I could really run the whole 10K of the Bridge Run. But now with the strep throat delay I’m getting worried that I will get behind in my training again. I know its only a couple days, but it really does make a difference.

>Pardon the Dust

>Just wanted to let ya’ll know that I am trying to revamp the blog to make it more user friendly, professional and snappy looking! I stripped down the old background and will be playing around with the layout a little, so don’t freak out if things move around a little (if you’re like me, any change at all just throws me for a loop LOL). I am also contacting some blog designers and asking them to donate their time and talent to help me with the things I just don’t have the technical skill to do. I’m hoping someone will take pity on us and throw us a bone. So hopefully there will be a new, streamlined blog in the near future….check back soon!!!

Running is going pretty well this week. I met up with a new running buddy, named Ashley, this week at the Greenway. She is typically much faster than me, but she took pity and ran at my pace yesterday…..thanks Ashley!!! I’ve been running with the jogging stroller all week too which is kicking my butt. I feel pretty good, except this pesky toe injury thing is starting to worry me. It has been sore now for over a month and not getting any better. I keep putting off going to the doctor, because I am so afraid they will tell me not to run. I am hoping that it is just that I need new shoes.

And in case you haven’t been to the Facebook cause page recently, we have 170 members and have raised almost $700…..very exciting….keep those dollars rolling in!!!!!

>Wow!!! I’m a "Runner of the Week"

>I joined a new group on Facebook today (and highly encourage you to join also, great oraganization!!) called Running for a Reason. This is a place for runners to gather together for the common cause of running for charity events to help inspire and motivate each other. I saw they posted about me on Twitter and just saw that I’m the “Runner of the Week”. I’m so excited that we are getting more publicity!!! Check the Facebook post out!!!

>Meet Christian and Lauren

>I am excited to introduce our first runner and JS honoree match up.

Meet Christian:

Christian was born 4/10/2009. He was born on Good Friday, hence the name Christian.

He was the 2nd child born to a couple in AZ. He was diagnosed with JS when his mother was 6months pregnant. He stayed at the Children’s Hospital for 3.5months and then Hacienda care Facility, until he was strong enough to come home. He was at home for 10 days. His parents hired a nurse to care for him while they were at work and she did a fabulous job. He had really bad apnea (periods when a person stops breathing) and his father had to revive him when they brought him home the first time at just 6weeks old. The Lord called him home on August 19th 2009 after the nurse was not able to revive him when the monitor went off.

Thank you to his mother Susan for providing his story.

Notice in this first picture that he is giving a big “thumbs up!”


What a precious angel

And meet his runner Lauren:

Lauren works with my brother Matthew at Xiong Lab at the Linberger Cancer Center at UNC-Chapel Hill. Lauren is one of our most seasoned runners. She ran for the UNC track team. She has asked some of her former team members and sorority sisters to join her and run with J4JS. This is her bio that is posted on the UNC website:

Holesh’s PR’s
• 3,000 – 9:45.21
• Mile – 4:57.14
• 5,000 – 16:42.97
• 10,000 – 35:24.30 (and in case you didn’t know…this is pretty dern fast!!!!!)

Junior Year: Placed second in the 5000 at the ACC Indoor Championships earning her All-ACC honors • Her best 5K indoor time was 16:27 at the ACC Championships • Also ran the 3000-meters during the indoor season • Did not run in the 2009 outdoor season • Was a 2008 All-ACC, All-Region and All-American in cross country.

2008 Cross Country Season: Claimed All-America honors at NCAA Championsips with 30th place finish • Earned all-region honors with a fourth place finish at the NCAA Southeast Regional • Finished fifth at the ACC Championships en route to All-ACC honors • Never finished below 15th on the year • Won the UNC Challenge and was named the ACC Performer of the Week.

Sophomore Year: Finished fifth in only 10,000 action of the outdoor season at the ACC Outdoor Championships • Also competed in the 3,000 and 5,000 during the outdoor season • Placed 12th at the ACC Indoor Championships in the 3,000 • Also competed as a member of the distance medley relay team and in the mile• Placed fifth on the team at the Notre Dame Invite • Ran at the ACC Cross Country Championships and the Southeast Regional • Scored at the NCAA Championships. Freshman Year: Member of the cross country team in the fall • Did not compete during the indoor season • Competed in the 5,000 at the ACC Outdoor Championships • Also competed in the 1,500 during the outdoor season • Made the ACC Academic Honor Roll.

Freshman Year: Member of the cross country team in the fall • Did not compete during the indoor season • Competed in the 5,000 at the ACC Outdoor Championships • Also competed in the 1,500 during the outdoor season. Made the ACC Academic Honor Roll.

Prep: Four-time all-state selection in cross country • Led her team to three cross country state championships • Earned all-state honors in the 800 and 1600 as a senior • Member of 3,200-meter relay champion team • Scholar athlete • National Honors Society member.

Personal: Biology major • Plans to attend medical school • Her father has had the greatest influence on her athletic career • Favorite food is salmon • Lists “Pretty Woman” as her favorite movie • Lauren Marie Holesh is the daghter of Michael and Annette Holesh • Born April 12, 1988, in Raleigh, N.C.

Thank you to Chrisitian’s mom and Lauren for sharing their stories. I will keep posting these stories periodically, check back soon for more matches!!

LB

>Haley in the News

>

I had almost forgotten about the reporters that were at the Children’s Inn while we were at the NIH last month for Haley’s medical testing and research. One of Will’s customers called today to tell him he saw him and Haley in the USA Today. Here is an excerpt of the article. Click here for the full story.

Will Buchanan watches as his daughter Haley, 21 months, pets Viola, a therapy dog, at Children's Inn at the National Institutes of Health. Haley is being treated at NIH for Joubert Syndrome.
Will Buchanan watches as his daughter Haley, 21 months, pets Viola, a therapy dog, at Children’s Inn at the National Institutes of Health. Haley is being treated at NIH for Joubert Syndrome.

var storyURL = “http://www.usatoday.com/life/lifestyle/pets/2010-01-13-petheroes13_ST_N.htm”; var storyTitle = “True stories of heroic dogs”; var articleSummary = “These pets perform remarkable feats in service to humans.”;

A golden Labrador is a treasure for this child and her family

BETHESDA, Md. — Will Buchanan walks several steps behind his toddler at the Children’s Inn at the National Institutes of Health.

Getting around is challenging for 22-month-old Haley. She has Joubert syndrome, a disease that affects balance and muscle coordination. She uses a tiny walker and wears a harness, which her dad is holding to keep her upright.

Suddenly they both smile. A big yellow dog lying in the hallway is wagging its tail at Haley. Ever so gently, her dad guides Haley to the floor to sit beside the dog. And ever so gently, Haley reaches out for the dog’s muzzle. “Dog,” she says. The dog stretches out a paw and touches Haley’s leg.

“We have two German shepherds at home (in Dallas, N.C.), so she’s really happy to see this dog,” says Haley’s mother, Laura Buchanan. “This makes it easier for us.”

Viola, a golden Labrador, belongs to the Children’s Inn, a private, non-profit residence on the NIH campus where families whose chronically ill children are being treated at NIH can stay. Mars Inc. donated Vi to the inn in 2008 after she was retired as a Seeing Eye dog. The kids can spend time alone with Vi and attend special activities with her.

“Having a dog here helps the children relax, feel more at home, and makes their treatments more bearable,” says Meredith Carlson Daly, media relations coordinator at the inn. “There have been many studies done showing how beneficial animal therapy can be. We see those benefits here every day.”

>The Rollercoaster Ride that is a Charity

>This week has just been a constant rollercoaster ride with J4JS, up and down all week…..and its only Wednesday! I have had lots of inquires about people wanting to join and a couple new committed team members. And most exciting of all…..we have reached the $500 mark on Facebook, my original total fundraising goal! But I have also had a rough week with lots of let-downs. I won’t get into specifics but lets just say corporate America can really suck!!!

Running has been really rough this week too. So far I have been confined to the treadmill and it is totally kicking my butt. I don’t know what is going on with me, but I feel like I have lead in my feet. But I am looking forward to meeting up with some of my friends in Columbia this weekend and running with them…..or behind them rather since I am soooo sllllooooowwwww 🙂

I am also working on a new blog segment. I thought it would be neat and inspirational to match runners up with people affected with JS, so they could run and raise money in their honor. I have asked the JSF members to send me a short bio on their child and a picture so I could match them up with a runner. So if you have a family member affected by JS and want to be matched up with a runner, let me know (either leave a comment here or email me.) I think it will be interesting to post everyone’s story and give J4JS a face if you will.

>Blah, Blah, Blah…….501(c)(3) and Other Confusing Jargon!!

>I am beyond frustrated today with my Jog for Joubert work. In thinking of asking for corporate sponsors, I thought it would be a good idea and get this thing legitimized, something I have been putting off for a while. If this venture ends up being a successful one, I need to make it an official non-profit organization. I am a nurse…..not a business person, or legal expert, or financial guru…..none of this makes sense to me. Tax exempt, articles of incorporation, bylaws, charitable licensing, board of directors…….my poor little pin head is spinning. I don’t even know where to start, or if all this leg work is even worth it right now. Maybe I will just sit on this stuff for a while and see how it all pans out. If we raise a decent amount of money and people are still interested in continuing with my initial vision then maybe it will be worthwhile. My original vision was so grand and I thought it would be so easy, but each day the reality of how hard starting a charitable organization is smacks me right across the face.

My upcoming running plans are lifting my spirits though. Tomorrow I won’t have to worry about squeezing in a run before Haley wakes up in the morning or during her nap because Grandma will have her tomorrow, so I plan to just do a very spontaneous outdoor run where ever I happen to be. I just hope the weather isn’t too bad. Then next weekend I will be in Columbia visiting some friends (who are also team members) and we plan to run at the Riverfront Park, a run I used to enjoy when we lived there. I am starting to get used to this cold weather and actually enjoy it.

LB

>Running With Others Really Does Make a Difference

>So, as part of my New Years running resolution I decided to go for a run today with some other people. As a general rule, I do not like to run with others because…well that’s just my personality. I’m kind of a loner, but I am also very self conscious since I’m soooo slllllooooooowwww and can’t always go the distance. But I decided to suck it up and do it today and I am so glad I did!!! I met two ladies through another runner that I know through an online mommy group (she is also one of my blog followers…big shout out to Ashley, check out her blog if you have time). They meet up a couple times a week and run at the Greenway in Gastonia. I had never run the Greenway, but its a really nice place to run or walk. Very clean, quiet, well maintained, and best of all FLAT!!! I found that I went farther than I normally would have running with them. It is so easy for me to let myself quit when I am by myself, but when I’m with others I guess a little bit of my competitive nature comes out and I want to at least do as much as they do. I have some work to do to keep up with these girls though. They ran at my pace today, but they said they pick up the pace at least once a week and they were able to hold a pretty steady conversation the whole time…..meanwhile, I am huffing and puffing throwing in an occasional “yeah” or short sentence. But I really did enjoy myself, I hope to be able to meet up with them at least once a week. Lisa and Tina, thanks for letting me run with you guys today!!

I am working very hard on the Jog for Joubert campaign. Sometimes I am so overwhelmed and wonder what have I gotten myself into. And I am so eager to see some results and when I don’t I get very frustrated. We have almost 120 facebook followers, at least 5 new people interested in running with us at the CRBR and raised $185. Slow but steady progress. I have put together a fundraising packet. If you would like a packet please email me or leave a comment here and I will email you one. There is a welcome letter thanking you for your support and explaining the campaign, a sheet on fundraiser tips, and a sample letter to give donors. I am also working on some marketing material like banners, T-shirts, and website. These things are pretty important but difficult to do because of the out of pocket costs so I am going to start looking into corporate sponsors. So if you think your company would be interested in sponsoring us there will be advertisment opportunities for them in return with T-shirt spots and web-links on the blog, just let me know if you think anyone would be interested.

Thanks again for all your support!!!

LB

>Brrrrrr

>So, it has been almost 2 weeks since I’ve been able to run. That nasty cough is finally GONE, poor Will has it now though 😦 And what better way to kick off training after a respiratory infection than to run in 28 degree weather!!!! I am so very sick of the treadmill and Will was here to watch Haley, so I layered up and braved the cold. It really wasn’t that bad. Sure my lungs burned a little bit, but was that my lack of training lately or the cold air…ehhh who knows. My toes got a little cold, but I made it 2 miles. Better than I thought I would do, so I can’t complain. I found the training plan for the Bridge Run yesterday, it does look a little daunting, seems to jump up in mileage each week pretty drastically. The rule of thumb is not to increase mileage more than 10% each week, but I’ve got a deadline, so I will push a little over that limit, but not too much to hurt myself….don’t worry Mom!!! This is what I am looking at for the next 12 weeks.

BEGINNER Training Schedule

Week Sun Mon Tue Wed Thu Fri Sat Total
1 2E OFF 1E/1W/1E OFF 2E OFF 1E/1W/1E 10
2 3E OFF 1E/2W/1E OFF 2E OFF 1E/1W/1E 12
3 4E OFF 1E/2W/1E OFF 3E OFF 1E/1W/1E 14
4 5E OFF 3E OFF 3E OFF 5K E 15
5 5E OFF 4E OFF 4E OFF 1E/1W/1E 16
6 6E OFF 1E/1M/1E OFF 4E OFF 3 E 16
7 6E OFF 4E OFF 4E OFF 5K Race 18
8 6E OFF 1E/2M/1E OFF 4E OFF 4E 18
9 7E OFF 1E/3M/1E OFF 4E OFF 4E 20
10 7E OFF 4E OFF 5E OFF 5K Race 20
11 8E OFF 1E/3M/1E OFF 5E OFF 4E 22
12 8E OFF 5E OFF 2E OFF 10K Race 22

We have half a dozen or so people that are interested in running with us. We have raised $175, and have over 100 people on the Facebook site. Pretty good!! I am working on a Fundraiser Packet so be on the look out for that in the next week or so. As always, thanks for your support!!!