National Volunteer Week


It's our favorite time of the year (besides HHT Awareness Month) - NATIONAL VOLUNTEER WEEK!

That's right, it's a week all about how awesome you and your support for Cure HHT is.

Check back every day for new stories about our stellar volunteers.

 

Cassi Friday

It’s a very real possibility that Cassi Friday’s husband, Anthony, and her 8-month-old daughter, Eleanor, may one day need blood transfusions to combat HHT blood loss. Both have been diagnosed with HHT type 1 and have a family history of transfusion dependency.

To encourage blood donations, which may one day treat her family and already saves the lives of HHT patients every day, Cassi held a blood drive this past March in tribute to Cure HHT.

“There have been several times when my husband has bled so much, I thought we would have to get an emergency transfusion,” Cassi said. “I am the same blood type as my husband and daughter, so I thought giving blood would be a great start.”

Cassi contacted the local Red Cross about getting involved and was invited to be part of a drive already scheduled in her area. Not only did the Friday family attend the event, but they were the faces of it, sharing their HHT story in the event press release and marketing.

“We try to donate to Cure HHT when we have money, but I feel called to be a more active volunteer,” Cassi said. “I’d like to coordinate a blood drive each year to raise HHT awareness.”

Linda DeVizia

You know when your son’s nosebleeds are caused by something more than being a “picker,” said Linda DiVizia, whose son, Jack, was diagnosed with HHT at 5 years old. Thankfully, after seeing a pediatrician and ENT who didn’t know what to do with Jack, Linda took him to a blood specialist who was able to guide her in the right direction.

“After I educated myself through Cure HHT, I had to educate all of Jack’s doctors between MRIs, CAT scans and screenings,” Linda said. “We are lucky - he can live a very normal lifestyle, and I am grateful to have the knowledge I have about this disease.”

Now that Jack is all grown up and headed to college, Linda has recommitted to the Cure HHT mission in a BIG way. In February, she hosted a fundraising Cut-A-Thon along with a pre-party fitness class in honor of her son and to celebrate her 50th birthday. In just 48 hours, she raised $13,000 to find, treat and cure HHT.

Talk about being a cut above (get it…Cut-A-Thon…cut above…).

 

Savanah Schott

Savanah Schott’s first date was not the experience she had been hoping for. Instead, at 16-years-old, she spent the day feeling nervous only to choke when he showed up – literally. Her nose started bleeding, and all of a sudden she coughed up a blood clot.

She was transported to the ER, bleeding from both her nose and mouth. The episode lasted for 45 minutes before doctors had to manually cauterize the epistaxis with silver nitrate sticks.

“Have you ever bled for 45 minutes straight, bleeding so hard it comes out both nostrils and down your throat,” Savanah asked. “Nearly filled a sink up with your own blood? It’s awful.”

Now, at 24-years-old, Savanah is a legislative force of nature on the Cure HHT advocacy team. She has attended Rare Disease Week in D.C. and met personally with a number of representatives regarding HHT awareness, including Representative Dave Loebsack, who agreed to co-sponsor the HHT DATA Act.

“If you don’t educate others and advocate for your disease, it’s just going to spiral,” Savanah said. “It’s our responsibility to increase awareness.”

Sam Guyette

Nurses are the first people you talk to when going to the doctor or emergency room, said HHT patient Samuel Guyette, making it all the more important for them to know what HHT is.

A retired member of the U.S. Navy, Sam started proctoring nurse placement tests four years ago at Lake Land College in Illinois. Before starting every exam, he takes a few minutes to educate the students about HHT.

“I have been thanked by more medical people for giving them the info than I can count,” Sam said. “One of my former students is actually a Nurse at Barnes Jewish (WUSTL), so I can safely say I have at least helped one nurse with knowledge about HHT.”

Sam has spoken about HHT to more than 500 nursing students over the years, educating them on the symptoms of HHT and sharing his personal story. The only way HHT awareness is going to grow is if HHT patients aren’t afraid to talk about it and turn experiences that may seem negative into educational opportunities, Sam said.

“I know I might bleed suddenly and I accept it. There is nothing I can do except to explain what is happening,” said Sam, who was diagnosed 37 years after spots began appearing on his lips in 1967. “Always look for an opening in discussion to explain HHT.”

Jennifer Urbanek

A year before Jennifer was set to marry her fiancé, Barry, he had a stroke during surgery to remove a brain AVM, paralyzing him on the right side. After a year of intensive therapy, and a whole lot of loving support, Barry was able to walk down the aisle and marry Jennifer.

A year and a half later, they had a beautiful baby girl named Skye who would eventually become an amazing competitive swimmer, despite being diagnosed with HHT herself.

Jennifer has remained a pillar of support for her family through their HHT experience, but also for the Cure HHT organization, dedicating huge amounts of time over the years to raise funds to find, treat and cure HHT. She has been involved with Night of Hope since it began in 2012 along with multiple legislative letter writing campaigns.

“If we have funding to do additional research, we may have a shot at doing some type of gene therapy that could find a cure,” Jennifer said. “Knowing we aren't alone in this battle has been massively comforting.”

Cure HHT was thrilled to award Jennifer the 2017 Trish Linke Award.

Qadri and Doreen Skipper

In 2013, Doreen Blair Skipper began petitioning the New York City Council to rename a street after her beloved son and HHT champion, Qadri Skipper. Her dream was realized last June when she was joined by friends and family to honor Qadri’s memory.

"This was not only a testament of his character, I wanted to express our gratitude for all who partook in his care,” Doreen said of the ceremony which renamed a portion of 110th Street in Queens.

Qadri lost his battle with HHT and Pulmonary Hypertension at the age of 17 in 2012, but not before touching the community around him with his unending optimism, enthusiasm for life and dedication to learning.

He’s also remembered by students at his high school during a yearly scholarship ceremony, where five awards are given in his memory, and by fellow patients who attribute Qadri as the reason they are still alive.

Doreen said she will continue to share “Qadri’s Way” as she moves forward, spreading awareness of HHT and PH to provide the comfort and support that Qadri gave to all he came in contact with.

“I hope when ‘Qadri's Way’ is Googled, it will shed light and awareness on PH and HHT,” Doreen said. “It's not just a nosebleed."