Special Events Stories & Photos

Sarah Smiles 2nd Annual PHun-Raiser for Pulmonary Hypertension
Camillus, N.Y., November 2012

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In Nov. 2012, The Peek family hosted the "Sarah Smiles 2nd Annual PHun-Raiser for Pulmonary Hypertension," in memory of Sarah Peek, who lost her battle with PH at a young age. Close to 140 people attended and the event raised more than $10,000 for pediatric PH research and patient services!

Sarah's mother, Michelle Peek, had this to report about the event:

I can't believe we just held our 2nd Annual Sarah Smiles event! I thought last year was special, but this year was even more so.

We had more PH families and friends attend this year creating their own teams. I connected with a family that lives in California with their 2 ½ year old daughter, Nora, who is still fighting. Most of her family and friends are from our area and were able to attend in her honor as Team Nora. Her PH has worsened and she just started on Remodulin. We continue to try and spread awareness and raise money for patients like her. Nora's mom is friends with a speech teacher in our school district who knew our daughter Sarah who lost her battle at age 7. She also knows of another little girl in our area with PH. Small world!

Sarah's friend Monica lost her battle at age 2 only a few months after we lost Sarah. Her family and friends came as Team Monica to honor her memory. It brought us great joy to learn that Monica will have a baby brother in a couple months and we presented her mom with a surprise baby boy basket. We know that little boy will have his big sister, his special guardian angel to watch over him always. We appreciate so much that they support us even though our daughters have lost their battle, they continue to help us in the fight to rid the world of this disease.

We had another wonderful family attending in memory of their wife, mom and Grandma as Team Kathleen. Kathleen's daughter, Michelle, told me that she was one of the nurses in the pediatric ER with us when Sarah passed away. What are the chances of that? Helping us through our loss, knowing it was the same disease that took her mother from her. Again, small world!

Sarah's kindergarten teacher was there with her family in memory of her dad Joe, who just lost his battle this past year. And my hairdresser since the age of 5 came in memory of her sister, Julie. Ok, can the world get any smaller? There is no one on earth that can try to convince me that PH is rare. It is not rare, it is misdiagnosed. We will continue to repeat that over and over if we have to until the medical professionals get it!

Our friend and patient, Lori Funk, gets the award for donating the most baskets to raffle! She is a special lady and also our Syracuse Support Group leader who goes above and beyond.

My little sister Emily sang two beautiful songs dedicated to the patients and their families and I'm so proud of her for doing something so personal and emotional.

It was a wonderful day filled with family, friends, good food, good music, fun for the kids, a balloon release and raffle. I can't thank everyone enough for all their support. With our special teams this year we more than doubled what we raised last year! Over $12,000 and still counting!

We feel so blessed to be able to give back to PHA and all the patients still fighting. We know Sarah is smiling down on us as our constant cheerleader. We will never stop fighting….for her and for all the brave patients out there.

 

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NORD

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.