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Rare Disease Awareness Month

Lift Your Heart for HHT

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Help our rare disease mascot take flight!

February is Rare Disease Month and we wanted to SHOW OUR STRIPES in a big way! During our Lift Your Heart for HHT tribute celebration from February 22 through February 28 (Rare Disease Day®), for each donation made, we honored your loved ones who are either affected by HHT (patients, caregivers and HHT supporters) or who have sadly lost their battle to the disease, by adding a custom balloon to our Zebra friend, Telly's, collection and their name to our tribute wall below. Take a look!

With our combined love and determination, we can soar above this disease!

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Tribute Wall

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Marianne Clancy

"A true champion for the cause."

Dr. Marcelo Serra

"For his selfless efforts to make educational resources accessible to everyone!"

Barbara J. Bills

Terry H. Thompson, Jr.

"Happy birthday...Wishing you a great and safe year ahead."

Jerome Murphy

"In loving memory of Jerry Murphy"

"In memory of Jerome Murphy, a wonderful, funny man."

"To the Murphy Family: May the memories of your husband and dad bring many smiles and may those memories help you heal."

"Donating in honor of my uncle, Jerry Murphy, who passed recently and will be remembered fondly."

"We are very sorry for the loss of your dad, father in law and grandfather. I am sure his loss will be deeply felt by all who knew and loved him. Please accept our deepest condolences and know that you are in our thoughts and prayers."

Dr. Marie Faughnan

"Thank you for all you do, Dr. Marie Faughnan!"

Dorothy Dvorsky

"Grandma, I miss you every single day. I still can't believe that you're gone. I'm making this tribute in your memory in hopes of finding a cure for Abby and new treatments for me and dad! Love and miss you!"

To Everyone

"Be you and be your best!" -Robert Schmidt

Helen Lent

           "In loving memory"

Dee Woods

"Dee runs HHT Ireland and is a good skin."

Kathleen Brower

"We are all fighting with you Mom!"

 Cure HHT Staff

"To an incredible group of outstanding women who work tirelessly every day for the HHT Community!"

"Thank you for all that you do to find a cure for HHT."

Darin Robins

"Darin lost his battle with HHT but because of the outreach of Cure HHT in an effort to help him, others affected in our community now have a line to the help they so desperately need."

Oscean Letersky

"For recognizing the meaning of selflessness at the mere age of 12! Thanks for shinning a light on Cure HHT and the Rare Disease Community!"

Nella Seymour

"To a true HHT Warrior! Happy 18th Birthday!!"

Willow Thomas

"Wishing you a world of hope and good health!"

HHT Center Directors

"For leading your teams to excellence in the care of HHT."

Marlene Hayes

"Miss you everyday Mom. You had amazing strength. You were such an HHT warrior."

HHT Center Nurses & Coordinators

"For passionately helping HHT patients live their best life!"

Terri Morris

"Keep fighting the good fight!! Happy Birthday, we love you!!"

Barry Steel

           "Love you, keep fighting."

Alan Braverman

"This balloon is meant to give you hope for such better days ahead. May you get the treatments you need to fully restore your health! You may have HHT but it won't have you!"

John Sizemore

"In loving memory"


"For everything you've done in my life, I miss you with everything in me. You fought HHT with everything you had and in such high spirits. I truly hope you're doing amazing in heaven with Nonna<3"

Patricia Dawn

"In memory of my beautiful nan."

Pam Plaisted Redmond

Roberto A. Vera

"A Balloon In Memory Of My Nephew Roberto A. Vera (Rob) Who Died From HHT At Age Of 17🙏🏽"

Donald Savino

"I miss you brother/best friend."

Jeffery Pollack & Katharine Henderson

Yale HHT Center - "THANK YOU for treating my son's pulmonary AVM's. You two are awesome!!"

Emma Sue Price-Ellis

"My sweet mom whose battle with HHT got worse each year and complicated the treatment of her other health issues. You are and missed."

Edgar F. Finegan Jr. & Family

"Many family members impacted by HHT, to varying degrees. Let's all work to Cure HHT!"

Frank Saponare Sr.

"Loving Father, Husband, Grandfather taken too soon - We miss you everyday"

Ian Lovejoy

"We miss you Dad! Not a day goes by that we don't see you in our lives - laughs, dad jokes, song lyrics, Rory's personality…Love you Papa bear xoxo"

Robert, Austin & Sierra

Helen Grafton

"In loving memory of my mom. Through her tragedy and loss, her children and grandchildren gained knowledge, self-advocacy, and strength. ❤️😇❤️"

Leighann & Travis

"Encouragement for all."

Dr. Gossage & Janie

"Special thanks to Augusta HHT Center."


"You're my brave warrior Nella 💪🏻♥️."

Kat Stout & John Roberts

"In memory of my mom, Kay Roberts and my uncle, John Roberts."

Herminia Ricon

Dennis Sprecher

"In honor of Dennis Sprecher for his tireless dedication to expanding treatments for HHT patients."

Muriel, Monica, Marie, Ambrosia, & Otsuka Boys

"This for my daughters, granddaughters and grandsons. They are all awesome HHT Warriors."

Raymond Mills Jr.

"We miss you and Love you always."

Jim Lapides

"Thank you for staying in touch with me and guiding me in the best directions. You are a gem."

Joe Sayers

"You’ve always been my hero."

Dr. Scott Trerotola

"Honoring Dr. Scott Trerotola and his team at UPenn for his work to make HHT manageable for all those impacted."

Kim, Jax & Wyatt Milstid

Brittany Gorman

"Brittany you are Strong like The Hulk !! A true HHT warrior!!"

Frank Saponare Jr.

For the Whole HHT Family

"We struggle together, we survive together, we are stronger together! I’m beyond thankful to have this community."  -Rachel Daringer

Jackie Roberts

"My sister had HHT lost battle last February she fought hard."

Juliana Cornale

"Keep fighting the fight! Your courage, strength, and determination will get you through this. I love you so much!!"

Dr. James Gossage

Ernie Keller & Jane Gadjo

"We miss you every day!"

Christopher M. McMahon

"Chris, you fought the good fight. We miss you. ❤️"

Dr. White & Lynne

WashU Pediatric HHT Center - "Thanks for all you do!"

Jessi Dunn

"Happy Birthday, dear Jessi., You are an amazing and loving Granddaughter. We are blessed by you and love you very much. God's abundant blessings on your 12th birthday."

Patricia Valverde

"Mami eres la mujer más valiente y fuerte que conozco, te amo 💜"

Curtis M. G. Gilmore

"We lost you suddenly during your senior year in high school, less than two years after I was diagnosed. I feel the guilt that you were never tested. Though the local docs denied it, the signs were all too clear."