Hello friends! Today was my first day sharing my story for UNYTS. I had the honor of sharing the podium with a lovely woman who donated her daughter's organs when she passed away. It was such a wonderful experience to be able to witness the miracle of transplantation and donation from both sides. I was truly moved to be there and be able to share with others how much my donor's gift has meant to me!
I can't remember if I shared with you, but my Alma Mater, St. Bonaventure will be starting a Donate Life Club this year. I will be speaking at SBU on Thursday, September 16. I am so thrilled to be able to return to my college to share the amazing things God has done for me and to introduce UNYTS and Donate Life to the University. What an incredible mission God has sent me out on, to help educate others about the gift of organ, eye, and tissue donation!
I will be off line for a couple of days. Something wonderful is going to be happening and I can't wait to share with you next week.
All my love to all of you! Nancy
You've Been Given the Gift of Life, Give it Back!
Wednesday, August 25, 2010
Saturday, August 21, 2010
Southern Tier Feis
I know you are all probably getting tired of all of our Feis stuff, but I am just so proud of Hannah. We just got home from Binghamton, NY and Hannah had a terrific Feis! She has finally scored well enough in each dance to move to the next level in January. She has been working so hard and all of the dreaded practice has paid off. We only have two more Feisiana this year, and the next one isn't until October, so we are all looking forward to a break!
Here we are on our way into the Feis
Here is Hannah after. This is the first Feis we have been to that has awarded actual trophies, that was really cool!
She received two 1sts and three 2nds. Hooray!
Friday, August 20, 2010
Another Post-Transplant Milestone!
Yesterday was a big day for me. Last week Hannah got a new bike, a 26 inch trail bike. She had totally outgrown her 20 inch bike, so my parents chipped in and we got her an early birthday present. Now that she has this awesome bike, she has been wanting to ride it everywhere.
Scott got down our bikes and tuned them up and I purchased a new bike helmet for both Hannah and me. The stage was set. Now, I have to tell you that I have not been on a bicycle since before Hannah was born, 10+ years ago. I kept assuring myself that it would be easy, after all, there is that saying, "It's just like riding a bike" meaning, you never forget how.
Last night Scott was going to be meeting an old high school friend, so Hannah and I were home alone. I put my brave on and decided to load the bikes into the back of Scott's truck so we could take them to our local bike trail. Hannah was ecstatic, I was as nervous as could be.
We started down the beautiful trail and I felt such a sense of exhilaration. I was doing it! I am not going to tell you it was easy, I huffed and puffed and my legs burned, but I praised the Lord for every hill I climbed and for the chance to get to do this again, and this time with my daughter!
We rode about 5 miles, WOW, and though I had jello legs when we got back to the truck, I was SO HAPPY to be alive!
Don't forget to be thankful for the little things that you may take for granted, God has blessed you by giving you the ability to do them!
Scott got down our bikes and tuned them up and I purchased a new bike helmet for both Hannah and me. The stage was set. Now, I have to tell you that I have not been on a bicycle since before Hannah was born, 10+ years ago. I kept assuring myself that it would be easy, after all, there is that saying, "It's just like riding a bike" meaning, you never forget how.
Last night Scott was going to be meeting an old high school friend, so Hannah and I were home alone. I put my brave on and decided to load the bikes into the back of Scott's truck so we could take them to our local bike trail. Hannah was ecstatic, I was as nervous as could be.
We started down the beautiful trail and I felt such a sense of exhilaration. I was doing it! I am not going to tell you it was easy, I huffed and puffed and my legs burned, but I praised the Lord for every hill I climbed and for the chance to get to do this again, and this time with my daughter!
We rode about 5 miles, WOW, and though I had jello legs when we got back to the truck, I was SO HAPPY to be alive!
Don't forget to be thankful for the little things that you may take for granted, God has blessed you by giving you the ability to do them!
Monday, August 16, 2010
A wonderful Feis Weekend!
I can't begin to tell you how proud I was of Hannah this weekend. She danced better than I have ever seen her dance and got a 2nd in the Hard Shoe dance she has been struggling with. In all she received two 1sts and two 2nds. Not half bad. She still needs to place in her second hard shoe dance, but this was her first weekend competing in it, so she has time. We will be in Binghamton this weekend for a Feis, so hopefully she will place there.
Great job, Hannah Marie!!!
Friday, August 13, 2010
Our Weekend at Willow Bay
I had not been able to share our pictures from our camping weekend. We camped with the Dixons, their daughter Mary is a friend of Hannah's from Irish Dance. We really enjoyed getting to know them better.
Hannah and Mary swimming in the bay.
We enjoyed hanging out on the beach.
The kids were practicing skipping rocks. Mary's brother, Noel, was a natural.
I am planning to take an adult Irish Dance class in the Fall, so Hannah has been teaching me some moves. Here I am trying to do the Jig.
The famous Scott shot.
The adults had a great time playing a bean bag toss game. Look at that throw, Laura put me to shame!
My Turn...
What a great weekend!
We are off to Buffalo this afternoon. Hannah has a Feis in Niagara Falls tomorrow. She has been practicing hard and is hoping to place in her two hard shoe dances. I'll let you know how she does!
Thursday, August 12, 2010
Clinical Trials Bill Passes Senate!
The U.S. Senate passed S. 1674, the Improving Access to Clinical Trials Act, by unanimous consent.
This achievement would not have been possible without the letters written and calls made by dedicated and committed CF Advocates like you.
All that remains now is for the House of Representatives to pass the bill as well. Even if you have already asked your Representative to sign on to the bill as a co-sponsor, now is the time to tell the House to pass the Improving Access to Clinical Trials Act.
The Improving Access to Clinical Trials Act would allow people with CF who are on public benefits to participate in important clinical research without losing their health coverage.
Tell your Representative to pass the Improving Access to Clinical Trials Act today!
Thank you again for your help and determination! Together, we are making a difference for people with CF.
To learn more about the Cystic Fibrosis Foundation, visit http://www.cff.org./
This achievement would not have been possible without the letters written and calls made by dedicated and committed CF Advocates like you.
All that remains now is for the House of Representatives to pass the bill as well. Even if you have already asked your Representative to sign on to the bill as a co-sponsor, now is the time to tell the House to pass the Improving Access to Clinical Trials Act.
The Improving Access to Clinical Trials Act would allow people with CF who are on public benefits to participate in important clinical research without losing their health coverage.
Tell your Representative to pass the Improving Access to Clinical Trials Act today!
Thank you again for your help and determination! Together, we are making a difference for people with CF.
To learn more about the Cystic Fibrosis Foundation, visit http://www.cff.org./
Please Take The Time to Vote!!!
Upstate New York Transplant Services is in the running for a $250,000 national grant from the Pepsi Refresh Project, which will be used to purchase a much-needed bloodmobile, called the Donate Life Bus. But, we need your votes to win! Each month, Pepsi is awarding $1.3 million in grants to ideas that will have a positive impact in the community. Only the ideas with the most public votes at the end of the month receive funding.
UNYTS needs YOU to vote for the Donate Life Bus EVERY DAY throughout the month of August. Log-in to http://www.RefreshEverything.com/unyts to vote. If UNYTS is one of the top two ideas with the most votes on August 31, the organization will receive a grant for $250,000. Finalists will be announced September 1.
UNYTS needs YOU to vote for the Donate Life Bus EVERY DAY throughout the month of August. Log-in to http://www.RefreshEverything.com/unyts to vote. If UNYTS is one of the top two ideas with the most votes on August 31, the organization will receive a grant for $250,000. Finalists will be announced September 1.
Wednesday, August 11, 2010
Sad Days
Hello friends!
We were gone all weekend camping with another family at Willow Bay in the Allegheny National Forest. We had a wonderful weekend! The weather was perfect, the friendship was fabulous, and the food was never ending (CF and such good food isn't always a good combo, I came home with quite the upset stomach.)
When I was so sick, Jasper never left my lap. He would look up at me with the most adoring look and I knew he loved me more than anything!
We were gone all weekend camping with another family at Willow Bay in the Allegheny National Forest. We had a wonderful weekend! The weather was perfect, the friendship was fabulous, and the food was never ending (CF and such good food isn't always a good combo, I came home with quite the upset stomach.)
We arrived home Sunday afternoon to find cat vomit all over the house. I called and searched for my cat, Jasper. I finally found him in our basement in a puddle of vomit with his eyes glazed over and very weak. I knew this was coming, he has been losing weight for several weeks now, but it totally took me by surprise. My sweet boy was dying.
I hoped he might quietly pass during the night on Sunday, but he did not, so Scott took me to the vet Monday afternoon. I held my sweet boy in my arms and let him go. Can you hear my heart breaking? We buried him beside Oreo down behind our house.
Jasper was my birthday present from Scott and Hannah for my 27th birthday. He was all I wanted and I fell in love at first sight.
When I was so sick, Jasper never left my lap. He would look up at me with the most adoring look and I knew he loved me more than anything!He was such a patient and loving boy. He loved his brother, Cracker, and his two little sisters, Sweet Pea and Oreo, though I think Pea drove him crazy a lot of the time.
Pets add so much joy to our lives, yet it hurts so much to lose them. I wouldn't give back the 9 years Jasper was with us. I am hurting now, but the love he gave to me and our family makes it all worth it!
Jasper you were so loved and we will miss you terribly!
Jasper Matthews
August 7, 2001 - August 9, 2010
Goodbye my Sweet Boy!
Wednesday, August 4, 2010
Upcoming CF Foundation Events
SAVE THE DATE for the GREAT STRIDES fall walks on Saturday, September 18!
Join us in the Ellicottville Park Square or St. Mary's Episcopal Church at 99 Wildwood Ave in Salamanca. Check-in for the Salamanca walk begins at 10:00 AM, with the walk kicking off at 11:00 AM. Ellicottville check-in begins at 11:00 AM, with the walk commencing at 12:00 PM.
Register yourself and your team HERE and start your online letter writing campaign! If you need help, please contact the CF Foundation office at (716) 204-2535. We are happy to help with anything you need!
RISING STARS
The Cystic Fibrosis Foundation of Western New York is proud to announce the launch of the "Rising Stars" young professionals initiative. This is an exclusive group of young professionals ages 25-40 who are "rising stars" and can apply the success, leadership, and passion they exude in their careers to help us find a cure for cystic fibrosis.
If you are interested in helping out with this great new event or you would like to nominate someone you think is a "rising star", please contact Bonnie at bbarone@cff.org or (716) 204-2535.
CYSTIC FIBROSIS BENEFIT
Stop by the Cattaraugus Firemen's Club on Saturday, August 14th for an amazing cystic fibrosis benefit! There are a number of events taking place with proceeds benefiting the Cystic Fibrosis Foundation!
Kicking off the day is a Motorcycle Dice Run. Registration begins at 11:00 AM at the Cattaraugus Firemen's Club. The ride leaves at 11:30 AM and returns to the club at 3:00 PM. The ride is $10 per person and more information is available by contacting Don Burke at (716) 532-2169.
There are also a couple of fun tournaments to get involved with! A horseshoe tournament begins at 5:00 PM and is $5 per player. Also at 5:00 PM, a volleyball tournament will be held and costs $30 per team. More information about the horseshoe tournament is available by contacting Ron Dimpfl at (716) 257-9544. For more information about the volleyball tournament, contact Tracy Cooper at (607) 423-5119.
How about putting "a dent in CF?" There will be car bashing available for $2 per hit. More information can be obtained from Kyle Harris at (716) 257-5896.
A Chinese Auction is also being held at the Cattaraugus Firemen's Club. Tickets will be pulled at 6:00 PM and you must be present to win. For more information or to donate items for the auction, please contact Sara Green at (716) 257-3520, Heather Harris at (716) 307-7806 or Tammy Brooks at (716) 257-5975.
Finally, there will be kids game and activities from 4 - 6 PM and music by Chance Robertson's sound system from 8 - 11 PM!
HELP WANTED!
The CF Foundation office is looking for interns for the fall. Interested students can be in either high school or college. If you are interested, please contact Kelly at kkopra@cff.org or by calling the CF Foundation office at (716) 204-2535.
Join us in the Ellicottville Park Square or St. Mary's Episcopal Church at 99 Wildwood Ave in Salamanca. Check-in for the Salamanca walk begins at 10:00 AM, with the walk kicking off at 11:00 AM. Ellicottville check-in begins at 11:00 AM, with the walk commencing at 12:00 PM.
Register yourself and your team HERE and start your online letter writing campaign! If you need help, please contact the CF Foundation office at (716) 204-2535. We are happy to help with anything you need!
RISING STARS
The Cystic Fibrosis Foundation of Western New York is proud to announce the launch of the "Rising Stars" young professionals initiative. This is an exclusive group of young professionals ages 25-40 who are "rising stars" and can apply the success, leadership, and passion they exude in their careers to help us find a cure for cystic fibrosis.
If you are interested in helping out with this great new event or you would like to nominate someone you think is a "rising star", please contact Bonnie at bbarone@cff.org or (716) 204-2535.
CYSTIC FIBROSIS BENEFIT
Stop by the Cattaraugus Firemen's Club on Saturday, August 14th for an amazing cystic fibrosis benefit! There are a number of events taking place with proceeds benefiting the Cystic Fibrosis Foundation!
Kicking off the day is a Motorcycle Dice Run. Registration begins at 11:00 AM at the Cattaraugus Firemen's Club. The ride leaves at 11:30 AM and returns to the club at 3:00 PM. The ride is $10 per person and more information is available by contacting Don Burke at (716) 532-2169.
There are also a couple of fun tournaments to get involved with! A horseshoe tournament begins at 5:00 PM and is $5 per player. Also at 5:00 PM, a volleyball tournament will be held and costs $30 per team. More information about the horseshoe tournament is available by contacting Ron Dimpfl at (716) 257-9544. For more information about the volleyball tournament, contact Tracy Cooper at (607) 423-5119.
How about putting "a dent in CF?" There will be car bashing available for $2 per hit. More information can be obtained from Kyle Harris at (716) 257-5896.
A Chinese Auction is also being held at the Cattaraugus Firemen's Club. Tickets will be pulled at 6:00 PM and you must be present to win. For more information or to donate items for the auction, please contact Sara Green at (716) 257-3520, Heather Harris at (716) 307-7806 or Tammy Brooks at (716) 257-5975.
Finally, there will be kids game and activities from 4 - 6 PM and music by Chance Robertson's sound system from 8 - 11 PM!
HELP WANTED!
The CF Foundation office is looking for interns for the fall. Interested students can be in either high school or college. If you are interested, please contact Kelly at kkopra@cff.org or by calling the CF Foundation office at (716) 204-2535.
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