BBQ success!

Saturday the 17th of July we had our first annual BBQ for Finley to raise money for Foundation Fighting Blindness.  We are walking as the Finley's Fighters team on October 2nd in Pittsburgh.

We decided this year we wanted to do a fun fundraiser event.  We drove from Connecticut to Pennsylvania last Thursday night and spent all day Friday getting my parent's yard set up for the event.

Friday the set up went quickly.  We had a ton of help from family and friends (thanks to all of you who were here!)  We couldn't have done it without them.  We finished in record time thanks to all the help.

After we got everything set up, we went out to dinner and relaxed for the evening - knowing that the next day would be really busy.

Saturday my mom and I were up at 6:30 to start getting things ready for the day.

By 9am we had a ton of people here to help us get food ready.  (Thank you GiGi, Pap-pap, Orlandos, Helen Branthoover, Aunt Betty)

(my 90 year old grandfather helped us set all the tables)

By 12pm - we looked like we had been ready for hours!  We couldn't have done it without all of that help.  Please watch the slide show of pictures to see all the people who donated their time to help with our day.

People came steadily the whole day.  I enjoyed getting a chance to see friends I haven't seen in a long time.

Visiting with neighbors, and family and family friends all afternoon.  This slide show is just about everyone that was there that day.  Thanks to Larry Orlando, I now have great memories from the day. (click on Larry's name to see his wonderful caligraphy website!)

Even the folks from Foundation Fighting Blindness came and set up a table and talked with people about the work their foundation does.

 (Dina, Mat, and Matt)

We served hot dogs and ham BBQ, and noodle salad (which I need to put the recipe up for!), and chips and drink and fruit.  Oh, and of course - cookies!!!  We had so many yummy cookies lovingly made by friends and family.  I am enjoying the left overs.

The day was a huge success.  So many people came out to support our family and this wonderful cause.  We were overwhelmed with people's generosity.  We could never thank you enough.

 (Aunt Tricia had a splinter.  Poor girl)

It is hard to calculate how much was made from the BBQ, because we had money given to us BEFORE the day of the BBQ by people who couldn't come but still wanted to support us.

And we have also been receiving money in the mail since the BBQ.  It has been AMAZING.  I don't have any other words.

 (GiGi Pletcher, GiGi Appolonia)

I can tell you this.  We are at $6700 total raised so far.  Our original goal was $5000, so we passed that!  We were blown away.  So we set a new goal (of course!)  The more we can raise, the better a chance to a cure for Finley.

I have started to send the thank yous to all of the wonderful people who donated.  I ran out!  So don't fret.  If you donated, your thank you is coming!  I ordered more, and the thank yous (and magnets for those of you who many not have gotten one at the BBQ) will be in probably next week.  Then they will be on their way to you.  I wanted you to know that because I think acknowledging your generosity is VERY important.  We won't find a cure without you, so you need to know how much your help is appreciated.

While at the picnic, I was able to show many people the importance of braille and how the brailler works.  I had brailled Filney's Fighters bookmarks for everyone who wanted one.  If you didn't get one (or you would like me to make you one) just leave me a comment below.  It only takes me a couple of minutes, and it is FREE.  I would be happy to make you one!  It gives me practice.

 Mat and I also got to talk with two families who have blind family members.  We have local friends  - one gentleman is blind and the other is a family with two young daughters.  We had long conversations with them and it was nice to see what is coming for us.  I thank them for their patience with our questions, and willingness to talk with us.  They showed us that there is NOTHING Finley can't do with or without sight.

 By the evening - with all of the extra help - we had everything cleaned up and put away.  We were lucky to have such wonderful helpers that made everything run smoothly.

 (Andrea Swan - my second grade teacher.  She still has the same amount of infectious energy)

There were our two winners!  We had a winner from the drawing for everyone who donated $50/person/$75 a family and the winner of the $100/family donaters.

Congratulations to Tracey and Orville Strauser for winning the $50 worth of gift cards.  Contact us so we can talk!

And Congratulations to Tammy Sprock and her son Noah!  You are the winners of the $25 worth of gift cards.  Contact us so we can talk.

 Thank you Aunt Jess for doing facepainting and balloon animals.  You were such a hit!

 (Arlington wanted to face paint some people as well.  that was interesting)

Thank you to Judy Haines and Diane Ratai for checking in all the people and helping with T-shirt orders.  That was such a big job.

 (Arlington painting Marge Orlando)

Thank you to Marge and Larry Orlando for about 1 million things.  But most of all - being selfless when our family needed you the most.  Including all the pictures in this post today.

(my mom and Mrs. Orlando.  Arlington tells us that Mrs. Orlando is a bunny.  Yeah, okay)

Thank you to GiGi and Pap-pap Appolonia - for making all the cookies, helping us set up and clean up, and being the usual work horses they are.  My grandparents are 85 and 90 and they run circles around me!
 
Thank you to Aunt Betty and Helen Branthoover for coming down first thing Saturday morning and cutting up all the fruit and help us get all the food ready.  And Aunt Betty -thank you for coming Friday and helping us set up.

Thank you to Ben Pletcher (Mat's dad) for coming down on Friday and Saturday to help with set up and clean up AND for bringing us all the chairs we needed.  (And Sally -even though you couldn't be here - thanks for the yummy cookies!)

Thank you to Mike Prestia and Jim Haun who helped with set up and clean up on both days, and  - just like my grandparents - has an amazing amount of energy and stamina.

Thank you to everyone who donated chairs and tables and tents.  That made our day SO successful.

And thank you to everyone who came and supported us (of course).  It.was.amazing.

 (Arlington made me a vampire)

I am never going to be able to put all the pictures up today, so you are going to be hearing from me several times this week.  I hope you can take it!!

To all of you who love our family and want the best for our little girl - know how much you mean to us.  Whether you know us personally, through our parents, or are just people who saw our story and wanted to reach out - know that all of you are extensions of our family.

We know you are behind us all the way.  It gives us comfort as we watch Finley's vision get worse to know that you will be there fighting with us as long as it takes.

If you didn't get to come to the BBQ, but would still like to donate in Finley's honor to the foundation, you can contact me by leaving a comment, OR - you can donate right online on our visionwalk page right HERE   Just click on the word "HERE" and it will take you there.

You can also leave a comment if you would like a Finley's Fighters T-shirt or Long Sleeve shirt.  The T-shirt is $8.00 and the Long Sleeve is $11.  These are COST.  We would love to spread the word with our shirts - tell everyone who asks our story.  And of course - we want you to walk with us in October, so we will be wearing our shirts as a team!

 Tomorrow I will be back with more pictures!  And more stories from our fun weekend (BBQ and Kennywood)

And I will post the recipe of the noodle salad that all of you wanted!

See you tomorrow!

BBQ

The BBQ was a huge success!  I have to say that we have surpassed our goal this year which was to raise $5000!  So we can't wait to see what our final total will be in October!  I will fix all the pictures and put a big blog post up on Tuesday about our fabulous day.  In all , the BBQ itself brought in well over $3000!  That is just the people who came!

I can't wait to share!

Saturday is the big day!!!

Just one final reminder that Saturday the 17th is Finley's BBQ at my parents house!  If you are able to come by - please do!  We will be home all day so please stop by even if you can't make the 12-4 time.  We are going to have plenty of food and TONS of cookies courtesy of some wonderful woman (you know who you are!).

It is going to be a fun day.  Face painting, balloon animals, and my sister in law is even going to do characatures!!  So fun!  We will have coloring pages and tatoos for the kids as well.  Adults - we will have free magnets and I am going to braille your name on a Finley's fighter bookmark.

We will have the brailler there.  We will have information on the Foundation (reps are coming - we are stoked!).  We will have information on LCA.  We will be happy to talk to you about Finley and her condition and anything else.  We can't wait!

So come on down.  And if you can't make it, consider donating to the Foundation in Finley's name.  follow the links here on the blog.  And consider walking with us in October.

Can't wait!

The princess request

Finley request your presence at the BBQ this Saturday on July 17th.

If you cannot come between 12-4, then you can come ANYTIME to visit - if you let us know.  We will be around all day.  So please stop by and say hi - even if you can't make it during the 12-4 hours.  We would love to talk to you!  So please don't let the time of the BBQ keep you away.

 (Princess Finley is having a crazy hair day.  Her apologies to her loyal subjects)

And the best part?  You can sign up RIGHT HERE ON THE BLOG.  This little thing I put on the blog below?  You fill it out - just click on it and start typing.  Push submit and the bottom and I get your RSVP!  Isn't that cool?  I love technology.  Don't be afraid!  You can RSVP right here!  Right from your couch!



We are up to about 100 people for the BBQ.  I got a few more RSVPs today.  If you received an evite from me - please RSVP if you are able.  But honestly it is not too late even if on Saturday you decide to come.  We welcome ALL drop ins.  We have plenty!

 If you are not able to join us, but would still like to make a donation, please go to our VisionWalk page and do so.  (click on the word Visionwalk in the last sentence, and it will take you to our page) You can use your credit card and pay right on line with their secure sight.  Every little bit counts.  Every dollar means we are one step closer to a cure for LCA.  That Finley will get to enjoy the beautiful world with her eyes for her entire life.

So come down on the 17th.  It is going to be so much fun.  We can't wait to share our passion for this wonderful foundation with you and get you as excited as we are at the research that is out there!

See you in a few days!!

Countdown to the BBQ

Whether you like it or not I am going to put up a blog post every day this week.  I will try my best to include pictures for the grandparent's sake.

 Saturday the 17th is the BBQ for the Foundation Fighting Blindness.  We have about 90 people so far that have RSVP'd coming!  And others who have been donating to the foundation because they can't make it.  We are totally humbled that you would give to this wonderful foundation on Finley's behalf.  Please note that every donation - large and small - means the world to us.  And all of you who have been fundraising, getting ready to fundraise, and getting the word out about Finley - we are deeply humbled for your love and devotion for her.  We know that a cure will come in her life time.  And thanks to all the wonderful people out there, we thank you.

 The one story I must share comes from a neighbor of my parents.  She had gotten a Finley's Fighters car magnet, and someone asked her about it.  A stranger.  She told this person about Finley and about the cause.  And he gave her a donation.  Just.like.that.  This person doesn't know us at all.  But his heart was big and so he gave on behalf of our Finley.  I will never forget that story.  Ever.  That whole pay it forward - wanting nothing in return - floors me every time.

 I want to make sure that everyone understands that EVERY penny raised goes to the Foundation Fighting Blindness to fund research for retinal diseases.  None comes to our family and FFB is a non-profit organization.  I know you probably aren't questioning any of this, but just so you know - Finley is one of many children that will have their sight saved by people who donate to FFB.  Every little bit counts.

 So sign up to come to the BBQ.  We are going to have a great time!  We have coloring booklets for the kids.  We have face painting and balloon animals.  We have hula hoops!  We will probably come up with more games for the kids.

 We are giving away bookmarks (with our Finley Fighters logo) which I will braille your name on if you would like.  Our brailler and I are becoming BFF.

 We will have magnets to give you with our Finley Fighter logo.  We have a prize to give away!  We are having great food!  We will have some background music.

 And we will have information on Finley's LCA, LCA in general, and the Foundation.  You can ask any questions you would like.  Mat is a geneticist, so he will be able to answer questions about her genetic disorder.

 (she is dancing to The Music Man)

And most of all - we hope you come for the fellowship.  We look forward to talking and visiting with all of you.  We hope that you leave the BBQ realizing how much we love all of you and are grateful for you love of Finley.

We plan on making this an annual event, so if you missed it this year, it will be bigger and better next year!!



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Update on our happenings.  Finley had her third horse back riding lesson today.  She did great.  She even got to trot a little, and she thought it was fun going "very fast".

Arlington has a very loose top front tooth.  She looks like "Nanny McPhee" - it sticks out a bit becuase it is so loose and hanging low.  Yet - it will not give up.  Mat and I have both tried to (gently) pull it, but no luck. She is very frustrated.

Cainan jumped on a trampoline for the very first time today.  He was so excited once he realized he wouldn't die from the experience.  He and Arlington jumped on it for about 30 minutes - giggling to whole time.  I wish I had my camera.

We are having a mole problem.  Outdoors. Yesterday "Critter Cop" came by and went through our yard and set traps for the little buggers.  He wasn't cheap, but neither was the large excavating project and amount of plants we have in our yard.  We would like to keep those thank you very much.

I went to work for a few hours today.  I have to do some extra time over the summer - but on my terms.  It isn't so bad.  I took the kids.  They watched a video while I gathered the newest incoming kindergarten physicals.  I rewarded them afterwards and we went to the playground for an hour.

I am loving my new photo "fixing" program - Lightroom.  I ordered a book on how to use it and it came today, so I can't wait to peruse it and find neat things to do with the pictures.  Next on my wish list is Photoshop and a new camera!!  (in that order).

Arlington has been riding her new bike this week.  She loves it!  It has Skeleanimals on it.  And of course - it is pink.

 I will post more bike pictures tomorrow.

Finley got her new indoor sunglasses this week.

She has been really good about leaving them on.  She did tell me she "sees fine" and doesn't need them.  It is hard to explain to a 4 year old that they aren't those kind of glasses.

She will wear them indoors to help decrease the amount of light her eyes take in.

Outside, and in really bright areas, she will wear just regular sunglasses.

She looks very cute, but they are just another reminder to us of why we are fighting so hard.  We would like to be able to throw those things away, say goodbye to BESB, and say so long to the ever frightening Dr. Fulton.  And we know we will!!

Okay - so you will see me tomorrow!!  Aren't you excited?  But please RSVP for the BBQ!  We can't wait to see you!