Tuesday, November 20, 2012

Starry Night Update: What I am Thankful For!

As Thanksgiving is soon upon us, I thought it required a post about what I am thankful for...and there is a lot!  However, there is something else on the train tracks which is bearing down on me, and taking a lot of my focus...our upcoming December 7th Starry Night event, at the CPO gallery (Clinical Prosthetics & Orthotics building--149 South Lake Avenue, Albany NY.)   I have been busy collecting donations, meeting with volunteers, finishing last minute paperwork...and basically trying hard not to lose my mind!

So today I took a moment to breathe, and the thought popped into my mind: What am I thankful for?  Well, what I am always most thankful for are the friends and family in my life.  I have been blessed with people who truly care about me, and they show me everyday.  I have so many people who have been willing to help a cause that is near and dear to my heart; raising awareness of CMT, and funds for the CMTA's STAR Research Program.  And as I prepare for Starry Night, I can truly see just how much my friends and family care...through their generosity, and their actions.  I have been collecting items for months, and still have others coming that I couldn't photograph in time for this post.  Not only that, but other friends and family members have donated their time and efforts to install the CPO gallery and make it a success...and still others will be donating food and refreshments for the Starry Night event, not to mention their time in helping it run smoothly!

Baby Bundles (Blanket and Bib) by Carol Hook
I wanted to share some of the beautiful items I have collected, that will be part of our event...I did my best with the photographs, though believe me--these items are more spectacular in person!  And as I gathered everything together to take these pictures, I started thinking about why these donations are so special to me.  You see, I live with CMT everyday...and it is often difficult to see beyond the disability, and focus on other things in my life.  And during those difficult moments I feel like I live, eat and breathe CMT.  That's not the way I want it, believe me...though at times it's hard not to feel like I'm stuck in something that is unfortunately a big part of my life.  And part of me worries that when I am stuck, I may become annoying to those around me...that they may think Oh, no...she's TALKING about it again!

Batik Quilt by Kelli Clemens
 And if some of my friends and family thought those things, I actually would understand.  Sometimes I get annoyed at myself when it seems like I can't have a thought run through my head, without having 'CMT' attached to it.  That's a struggle I'm currently dealing with, as I attempt to find other things outside of myself, and this disease.  And I will get there.  In the meantime, no matter what people in my life may think when I start discussing my CMT, all of these beautiful items proved something to me; they love me and care about me, and want me to be happy and healthy...those thoughts trump all the other ones.  And when I asked for donations, they didn't even hesitate to share their time and their talents with me...they know this cause is near and dear to my heart, and that's all that matters.  Now, how could anyone look at such generosity and not be thankful?      

100% Cotton Baby Sweaters/Hats by Christine Fontaine 

Now keep in mind as you are looking at these photos...this is only a small highlight of what will be featured at the Starry Night event.  I am not the only person who has been collecting donations!  There are many other items for sale, not to mention all of the wonderful artwork by local artists.  There will be a silent auction and also a raffle, for the chance to win four Disney "hopper" tickets for a day (which means you can "hop" from park to park and are not just limited to one.)  And all money raised at Starry Night will benefit the CMTA, and will help to find a medical treatment/cure for CMT.  What could be better than that?

Scarf and Earrings by Susan Rivers
There are other things I am thankful for, as I prepare for this event.  For one, the opportunity to do a fundraiser for an important cause such as this...if it weren't for the people at CPO opening their doors to the Art de Cure organization, I wouldn't have the chance to help the CMTA in the first place.  Now as we move closer to finding that cure, I can feel like I had a part in that!  Most of all, I am thankful for my co-coordinator, Melinda Lang.  She shares my stress in making this event a success, and all the work that is involved in making it happen.

Jewelry by Al Davis
All of this has shown me something...I am very fortunate to have a lot of support in my life.  That is important for anyone to have, though I think it is even more important for someone who lives with a disability, and/or a chronic illness.  When you do, you can reach very low points in your life...sometimes it can seem as if no one else shares your struggles, or understands your pain.  Over the past few years I have found great support through the CMT support group and on-line community...I wasn't always aware, though, that I already had a great support system within my own family, and among my own friends.  Preparing for Starry Night has helped to remind me of that, which is always a good thing!

Jewelry by Kate Tumbleson
If you are looking through these photos and know that you can't join us on December 7th, don't despair!  Raffle tickets for the Disney prize have already gone on sale ($25 each,) and if you are the winner, we will contact you after the event.  And you can always leave me a comment if one of these items catches your eye and you are interested in purchasing it, but can't join us for Starry Night.  Want to help more?  We also have a link you can click on to donate to the STAR program...before and after the event.  There are many ways to show your support!  That link is: 

Gift Certificates for Massage, Acupuncture
and Facial Acupuncture:
Christine Zido, LMT
Lorinda Hilmar-Kimball, LMT
Cassandra Dugan, LAc
Debra Singer, LAc

For Disney tickets:

Fuzzy Scarves by Nancy Clarkson

Finally, let me say thank you to Dave and Elizabeth Misener, for opening your office to us, and allowing us in...as stressful as it can be at times, together we are truly making a difference!   Thank you, M&T bank, for sponsoring us and supporting our cause.  And last but certainly not least, let me thank all of the volunteers who will be helping to make our Starry Night event a huge success: Jackie Watsky from Art de Cure, Joanne Van Genderen, Donna and Rich Piche, Nicole Alonzo, Jessica Cameron, and Miranda Rand.  Without all of you, we wouldn't be able to pull this off!   And if you are still planning on donating an item, don't worry...I'm still collecting.  Even if I couldn't post a photo of your item, your generosity and support is much appreciated!  This year has certainly involved a lot of changes for me, and they were not always welcome ones. ..though the harder changes have often lead me down better paths I never expected to travel.  And in the end I have managed to learn something very important...I truly have a lot to be thankful for!  Have a wonderful holiday, everyone!



  1. And I am thankful for folks like you who are dedicated to the goal of finding a cure for CMT. :) PS - those knitted baby sweaters and hat are gorgeous!

    1. Aren't they, though?? If I were just a little smaller, I'd try to squeeze into them! Thanks for reading :-)

  2. Great post and pics. Just spoke with Dana at CMTA we have worked out the plan to get a page on the CMTA website to raffle off the Disney tickets, that I worked hard to get.
    I will have to keep track of everything and email people with their ticket numbers, write their name on tickets to throw in the hopper.

    Also I set up a page at the CMTA website about our event with a link where people who cannot attend the event, can still donate to help CMT.

    1. Awesome! Can't wait to see how many Disney raffle tickets we sell:-)

    2. Still waiting on the link. Reread your post. We are so similar and think alike. Although you do handle things with more grace and humor while I on the other hands go bonkers with stress. Just ask my husband, as I prepared for his family to arrive for TG dinner. He disappeared frequently.

    3. Haha! I think I maybe hide the stress better...and only the cats are here to see it :-)

  3. I'm ever amazed at your level of energy , and your total commitment to a cause ! You have done a wonderful job in setting up all that needs to be done , for what I look forward to a very enjoyable evening ..... put together very well ! You had named all the many people helping you make this possible, and I think you are all quite grand ! You all truly have a great deal to be thankful for ! Just look at your accomplishments !!! I'm so very proud of each one of you ..... And I'm very Thankful to call you my Friends !Bless you ... enjoy a wondrous day .....

    1. Thank you, Al! I'm glad you are able to join us, and for your wonderful jewelry donations to help our cause:-) We will have a lot of fun!!

  4. I am so thankful for people like you working so hard! What a gorgeous collection! I am sure the night will be a great success. You rock!

    1. Thanks, Lenka! I wish we lived in the same area, so you could join us...it should be a great night! :-)