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Saturday, November 19, 2011

 

On September 20, 2011 Dr Rudy Pascual from Wake Forest University Medical Center did an excellent presentation to the OTC Drugs and PH.  It was an interesting meeting in that the restaurant over booked their private dining room.  The presentation was made in the main part of the restaurant.  Hearing was sometimes difficult.  I saw one of the owners a couple weeks later and told him how he could make it up to me.  His eyes got real serious until I said "when I ask for a gift card donation for our golf tournament, I expect two".  He smiled and said "you got it".

At the end of October, Carmen Brown from 98.7 SIMON in Greensboro NC recorded a 15 minute segment on Awareness Month that was aired Sunday October 30th.  This is the second PH session they have done for us and have agreed to do one more for our April golf tournament.

Our group again sold tickets for tehe semi-annual Belks Charity Day Sale November 5th.  Easy way to make a little money for our group.  If you live in an area that has Belk's stores you might want to check it out.

The week of November 5th through November 11th we set up a PH information table at Wake Forest University Baptist Medical Center.  This is the This is our 6th year for hosting a table there at the medical center.

November 8th Brigid Foster from Accredo presented information on Health Care Reform.  There was so much informtion to absorb.  We appreciate any help in understanding the ins and outs of insurance and available resources.

November 11th several members of our grop traveled to durham NC for the annual UNC/Duke PH Educatio Day.  The day before I met up with one of the new leaders for the Raleigh group to help in the transition.  Then I met up with Leigh, our nurse representative from Actelion.  We enjoyed a great dinner and spent the next day together in various PH meetings.

Be sure to attend our annual PH Christmas luncheon on Saturday December 10, 2011 at Big  Shotz Tavern in Clemmons NC.  We do not do alchocol but they have the most amazing private dining room with all the AV equitment needed.  Our speaker will be Corporal Charles Sayers from the forsyth County Sheriff Department.  He spoke to the grop once before about "Keep Safe, Don't Be a Victim".  The information he shared was great but he told stories that had you laughing up a storm.  So by popular demand he is back for the Christmas Luncheon when we normally do not even have a speaker.  It will be great.

You don't have time to feel sorry if you stay busy.

A PAH Three--Fer
Friday, August 05, 2011

Had an awesome thing happen recently. You never know when something or someone will come forth who is willing to help.  Sometimes you just have to ask.

Our daughter worked for several years while in high school and college at Dockside, a seafood restaurant in Clemmons, NC.  We have had many support group meetings in their private dining room.  As a result John and I knew the owners and many of the staff.  John and I went to dinner at Dockside about 2 weeks ago. As we were checking out the cashier asked if we had our golf tournament yet.  Told her we did and that we did pretty good raising just over $18,000 of which $5000 would go toward patient services (namely scholarships) and the rest for PH research.

As we are talking Judy said, "I need to give your name and number to my daughter".  I knew her daughter worked in the music end of radio and mentioned that.  Judy then told me that her daughter recently changed stations and besides music she is now doing a community talk show about what is going on around town and non-profits.  I could not pull my PH business card out fast enough to give to Judy.  A few days later I decided to email the station.  Carmen called me (radio name) a week ago this past Tuesday.  She had been on vacation.  We talked for a few minutes and decided she would tape the interview the next day to be aired on Sunday.  She wanted me to remember not to call her by her real name on the air.

I made notes in a big, easy to read font to help prepare and have available if needed.  After the taping Carmen told me she had gone onto the PHA website and looked over the information.  As we were talking PH Awareness Month came up along with our golf tournament.  She wants me to contact her in November to do another segment for Awareness Month and in the spring to do a peice on our golf tournament.  WoW--that is what I call a three fer.  To help promote the station it is 98.7 SIMON out of Greensboro. NC. 

Thank you SIMON!

Cindy

Quilt Squares
Sunday, May 22, 2011

Do you quilt or know someone who does?  Lets connect to see if we can have some quilted squares ready for the PH quilt at the June 2012 conference in Orlando, Florida.  We are looking for one to be done about our support group and in memory. Call or email me.

Cindy

336-945-9696

cpickles50@gmail.com

8-5-2011 Our support group quilt square is almost done.  My sister who lives in PA agreed to do the square as I had asked.  However her quilting machine does not write.  She told me her hands were too shakey to try to embroider by hand.  She thoght maybe I could. When the square arrived it was great but I knew I could not do the embroidery by hand either.  After thinking about it I decided to contact the guy who has done the shirts for our golf tournament the past 2 years.  He has an embroidery machine.  I was not sure he would do it since it was just one piece.  He said he would--Yeah!  He has the square and I should have it back shortly.  What a load off my hands.  I know you will love it like all the rest of the squaress.  What a unique quilt this will be.

Cindy

5K Run/Walk June 25, 2011--Durham, NC
Sunday, May 22, 2011

Hello again:

This note is to give you a heads up about an upcoming event in NC.  As soon as more details are available, you will know.  So what is know is United Therapeutics is hosting a 5K Run/Walk in Durham, NC on Saturday June 25, 2011 in Durham, NC.  Online registration is now available at www.fsseries.com/pha5k  Proceeds will benefit the Carolina Support Groups.  More info to follow.

2011 NC Cure PH Golf Tournament, Raffle and Silent Auction--May 14, 2011
Sunday, May 22, 2011

Hi there: 

A week ago today I was recovering from our golf tournament that was held on Saturday May 14, 2011 at Salem Glen Golf and Country Club located just outside of Clemmons NC.  This tournament was held in honor of 5 year old David, one of the three kids in our support group. Our 53 golfers had a great round of golf.  It sprinkled for the first 2 holes and then the sun came out and the weather could not have been better. Food was outstanding and each of the golfers received at least one door prize.

This event also had a silent auction with some really great items on the block--NC State vs Carolina Football tickets, NASCAR Racing Tickets, and a racing helmet signed by Richard Petty, Bobby Allison, Junior Johnson, David Pearson, Ned Jarrett and Bud Moore, to mention a few.  Everyone enjoyed looking at the helmet.  Bidding started at $500 and we had no takers.  An appraisal valued the helmet at $1750.  We are not giving up with what to do with it.  I have one interested person who was not at the tournament.  If you think you might be interested give me a call.

This tournament was also special in that for the first time, Bob King KIA in Winston-Salem put up a brand new KIA as the designated hole-in-one prize.  I never met this general manager who was playing in our tournament for the first time.  He introduced himself and told me he had no idea what pulmonary hypertension was so he asked his mom who is a retired nurse.  What he said next almost blew me away.  He told me that any time we have one of these events he will be happy to put up a new car.  Thank you, thank you, thank you.

Our tournament does not pull in the money that many other tournaments around the country do.  We mostly have average guys who play golf.  So registration is lower than most but right in line with other tournaments in the area.  Preliminary figures indicate we netted $17,225.00. 

Thanks

08-05-2011  Just to update you on our golf tournament, we netted $18041 of which $5000 will go toward scholarships and the remaining for PH research.  We were happy with the final outcome.

Also wanted to tell you what happened to the 2011 Hall of Fame Signed Racing Helmet.  I contacted Tiffany, who donated it and discussed options.  I could see if the guy still would buy for $500, could spent another $150 and have the signatures authinicated or give it back to her to wrap up and give it as a surprise to her husband.  Tiffany told me that if Virgil did not want it she would buy it back.  I was not going to let her buy her own helmet.  You have to understand that we all know each other from different routes of friendship.  Tiffany and my son were good friends all through school and college. Tiffany's mom and Kathy are also good friends.

Kathy, Virgil's wife is a nurse and many years ago we used to work together.  Told her we did not get one bid at the tournament and wanted to see if Virgil was still interested.  The line was quiet and when she came back  she said "let me see if I can get more money out of him."  When we talked a few days later this is what she said "I told him there was one bid on the helmet but Cindy said you could have it for $600 if you wanted."  He said yes.  The only stipulation was it had to be willed to Billy, Tiffany's husband.

All turned out well as they are getting the signatures authinicated and it wil be worth much more. Only in America!

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.