Here Goes Nothing

So, I am a little nervous about making this post, worried that I will not be successful, that it will fail, and what people will think, but here goes nothing (no I'm not trying to get pregnant yet! LOL) I've created a new blog to kick off my new fundraising endeavor. I have been running again for several months and have decided to turn my new found hobby into a fundraising effort. I won't talk much about it here, as not to take away from Haley's blog and to constantly post about it here may annoy people who could care less about running. So, go check it out, this will all make more sense once you read it......and let me know what you think.

Movin On UP!!!!

Growing up is inevitable, and today marks yet another milestone for our BIG girl!!! Haley is being moved up a class at her preschool. Granted it is the one year old class, but she is moving up nonetheless. Her teachers have been debating the move for a while now. She is needing more intellectual stimulation and more structured activities and learning opportunities. The main reason they were waiting is because she was not mobile and they were afraid she would just be trampled on by the other mobile kids. They decided she was ready, they were just waiting on a spot to open up. Her first day in the big kids class will be Monday. A lot of the kids in the class she is moving to were in her class before they moved up so she will have some familiar faces. I am sad to know that she is moving from her current teachers. Ms Ann and Ms Violet are so good with her, but they are just right across the hallway, so they won't be far away.

Haley is getting better and better at walking. She is doing GREAT with her walker, she has learned to steer it and go pretty much anywhere she wants to go with it. I still keep the walking wings around her waist because I'm still scared that she will fall. I know she will fall eventually and will fall a lot, but she still doesn't have that protective reflex down pat and I still think if she goes down now she will go down hard.

Also, I can't remember if I posted about this before, but she is OFFICIALLY CRAWLING!!!!! Thinking back to January when this whole therapy thing started, I could have never imagined the day that she would be able to crawl. She has come along way and has worked so hard to get to this point!!!

And for those who are wondering what is going on with our insurance. We are in the process of the second appeal, and we are waiting for their response. I know what it will be, but I am hoping for a miracle. We were however able to qualify for 100% coverage through the state's early intervention program. We have been involved with them since the beginning, but their level of support is based solely on income minus medical expenses and childcare expenses. When we first started we did not qualify for any help, but because we have incurred so many medical expenses and I haven't been able to work full time since January we were able to get ourselves down to 100% coverage!! It is quite a relief, but we still have eat the costs of her therapy sessions dating from May until October. This is where the appeal is so important, we are hoping that insurance will come back and decide to pay for all of those visits.....so hope and pray that our appeal makes it to a sympathetic soul's desk (I'm not even sure if those exists in the insurance world HAHA). We are also waiting on Haley's walker to get here (which thankfully was covered by the early intervention program). The one she has now is a loaner from the state, her new one is much nicer.

Don't forget about the Joubert Syndrome 10x10 Fundraising Campaign. I am still brainstorming on several small projects and maybe one large event sometime next summer. But with the holidays coming, I know things like this aren't on the forefront of people's minds, I just wanted to remind people not to forget about it.

Happy Thanksgiving everyone!!!

Year Long Fundraiser for JSF

I would like to introduce the new fundraising campaign for the Joubert Syndrome Foundation called the 10 by 10 Campaign. The idea behind the campaign is to ask 10 people to ask 10 other people to donate $10 for Joubert Syndrome. It is a year long campaign which kicked off this October 10th and will end next October 10 (get it???? 10/10/10)

Joubert Sydrome is a really hard thing to raise money for, especially in the current economic climate. Fundraising in general is hard to do, even for the more widely publicized diseases and conditions. Because Joubert Syndrome is so rare, the fundraising is truly a grass-roots effort mostly depending on families affecting by the disorder going out and raising money and awareness and often donating money themselves. We end up asking the same people over and over again to donate therefore our base of support is not growing. One of the goals of this campaign is to help bring in second generation donors and broaden the network of fundraisers. My personal hope is that one day JS will have even half of the recognition that some of the other disorders do. Money raised for and by the Joubert Syndrome Foundation will help further research into the genetic causes of JS, possible treatments/cures, strengthen the network of support provided by the JSF to families and individuals affected by JS, raise awareness for JS to aid in earlier diagnosis and easier access to treatments and therapy, and the list goes on.

The easiest and quickest way you can help is to simply visit the 10 by 10 website and donate $10 in Haley's honor. Be sure to put in the "purpose" blank "10by10 campaign in honor of Haley Buchanan" so they can track where the donations came from. You can take it a step further and ask 10 (or more) of your friends to donate $10. I plan to host an event at some point in the coming year (most likely AFTER the holidays LOL) asking for a $10 donation from all that come. If you were so brave enough to host an event yourself that would be icing on the cake!!! Something as simple as a car wash, or spaghetti supper at church would be great! But I know any help/donation is a lot to ask in these hard times, and it is totally understandable if you are unable to help at the moment. We are just grateful for thoughts and prayers if that is all you can offer.

I'm hoping that this is making sense to everyone, because when it was first presented I myself was a little confused about the concept. There is no one big event that will take place on 10/10, WE are the event. 10/10/10 is just a way to help us remember to concept I suppose. This is a year long effort, so you will see me post about this periodically (and you will probably get sick of me talking about it) so hopefully this "squeaky wheel" will get some oil so to speak. Thanks for your help, and if you have any questions or want to help in any way please let me know.

New Fundrasing Opportunities for JSF

I have a couple new things to raise money for the Joubert Syndrome Foundation. First, I want to let you know about a fabulous friend I made when I first got pregnant with Haley. We met on an online mommy group (as corny as that sounds) and we have remained friends from the very beginning. Anyway, she is starting a children's clothing and accessories line, Little Chicken Designs. She donated that super cute little dress I gave to the silent auction at the conference.

Everything is custom made and 10% of all sales go straight to the JSF. She will be opening an Etsy store also when she gets a little more established, but you can put in orders via Facebook until then..... so stay tuned for that one.

And while you are on Facebook, if I haven't done so already, I now invite you to join the cause for the JSF. This is different than the JSF Facebook page. This one is to help recruit members to the cause and raise money. Once you are a member of the cause, pass it on to as many people as you can, even if we are just raising awareness and not getting donations.....that is important too!!!

And finally, every year the JSF as a whole does a "traditional" fundraiser....you know like school aged kids do. This year we are selling Sally Foster. For those of you who haven't seen this stuff before its really nice wrapping paper and gift-y type things. I have a catalog with me for those of you who are local and want to order that way. But you can also order online just make sure to put in the code 0507095 for the "school group account number" I think they said up to 50% of those sells go back to the JSF. I know for sure those that order the traditional way via catalog will not get their orders back until mid November. The fundraiser goes from now until October 1st and all orders are placed and once and delivered back to me to distribute. I'm not sure about ordering online, if your order is processed immediately or with the other, I will check on that one.

Anyway, as you can see, I have really gotten into fundraising for the JSF. We are a relatively tiny group compared to other "causes" out there. We just don't bring in the same amount of money as these other diseases and disorders do because its so rare and unknown. But the research going on is equally as important as the research going on for the other causes, so I guess we just have to fight harder to raise the funds. Sorry if I sound like a broken record, but this has become my mission. I will be putting the "how you can help" button back up on the page so that this information is easier to find in the future. Thank you all for your support!!!!!