Page 9 - HealthBeat December 2015

I HAVE WANTED TO HAVE A LEMONADE STAND SINCE IWASLIKE5,ANDWHENMYMOMTOLDMETHATI COULD HAVE ONE AT THE STATE CAPITOL TO RAISE MONEY FOR CF, I WAS REALLY HAPPY. ”
Aven also rides her bike in the event.
“It is very fun,” she said. “I feel very special because the policemen turn on their lights and sirens when I come across the finish line.”
The tour, which takes place every spring, has raised $44,485 in the past six years, Brittany said, adding that the date for the 2016 tour will be announced after Jan. 1 and that those interested in learning more can visit the group’s Facebook page, www.facebook.com/65RosesTour.
Great Strides, the national fundraising walk for CF, is another annual fundraiser. It is the foundation’s largest national fund- raising event, its website states. The Little Rock Great Strides walk takes places at the Little Rock Zoo, Patrick said, adding that the visible location and social-media chatter help increase awareness of the event and CF.
“Everybody’s made aware,” he said.
“It’s great for the CF kids, too,” Brittany said. “This is really the only event where they get to see one another, and it’s just great that they can see that all the people that are there are supporting them.”
Aven decided to host a lemonade stand to raise funds “because there’s a lot of kids who have it worse, who are struggling with CF more than I am,” she said. “I have wanted to have a lemonade stand since I was like 5, and when my mom told me that I could have one at the state Capitol to raise money for CF, I was really happy. My favorite part was meeting the governor and seeing the parade of people walking from Blue Cross to come buy lemonade from me.”
The fundraiser was sponsored by Ar- kansas Blue Cross and Blue Shield, whose marketing hashtag, eLemonadeCF, helped gain social-media attention, Brittany said. The day after the lemonade stand at the Capitol, Aven hosted another one at Ar- kansas Blue Cross and Blue Shield’s lo- cation on Riverfront Drive. The events raised about $8,500, Brittany said.
NEW TREATMENTS, NEW HOPE
Now the future is brighter for Aven and other children with CF because innova- tive drug treatments are showing great promise, Willis said.
“There have been a lot of great advances
AVEN EMERY, CYSTIC FIBROSIS PATIENT
in CF care over the last few years in par- ticular. The newest advance is in CFTR modulators, and these are therapies that actually help correct that genetic defect that we see in CF, so the CFTR modula- tors kind of restore balance to the cells,” she said. “Right now, they only target cer- tain CF mutations.”
The two CFTR modulators currently on the market are Kalydeco and Orkambi, which are only approved to treat certain segments of the CF population. This is be- cause there are more than 1,800 known mutations of the CF gene, Willis said, and those mutations affect a protein called CFTR, or cystic fibrosis transmembrane regulator, in different ways.
“Therefore, it’s necessary to design therapy that targets the mutation based on the way it affects the CFTR protein,” she said, adding that she expects to con- tinue seeing advancements in research fo- cusing on CFTR modulators.
The new drugs are known as a “daily cure” because they must be taken every day, she said.
“We’re really looking forward to the new drugs and therapies that are coming down the pipeline,” Brittany said. She added that she hopes Aven will be able to start taking Orkambi in a few years because the drug is only approved for people who are older than 12.
“Hopefully, at some point, 100 percent of the CF population will have therapies to correct that faulty gene, which would be the closest thing to a cure,” Brittany said.
Willis said she has seen success with the new therapies.
“There’s just been such great improve- ment with the treatments that patients are living longer, fuller lives. The sky’s the limit for their future,” she said.
“Nine years ago, you didn’t have that hope at all,” Patrick said. “We’ve seen the benefits of fundraising and research.”
“It gives us more hope,” Brittany said, “and hopefully [the parents of newly diag- nosed patients] will see that hope is there as well, because they’re the ones who are very, very scared, just like we were. With our supporters and the CF Foundation, hopefully, one day CF will stand for cure found.”
SUNDAY, DECEMBER 20, 2015 // HEALTHBEAT // ADVERTISING SUPPLEMENT TO THE ARKANSAS DEMOCRAT-GAZETTE 9
“Saving lungs! One Vape at a time!”
Stop smoking, start vaping!
Your one stop Vape shop in the Rock. Over 60 different Flavors in our tasting bar. Friendly and Knowledgeable Staff
“My hubby hasn’t smoked in two weeks thanks to these guys! Thank you!”
Laura C.
Saving lungs! One Vape at a time! Thanks Rogue!”
Jenny M.
“Very helpful staff had answers to all my questions. Very helpful. And the products they sell are all of high quality and priced great. I like how they have all the flavors they sell available for testing in the back of the store. Always hated figuring out online what flavors I might like.” Nathan H.
Two locations in Little Rock to serve you
Rogue Vapers
315 North Bowman Rd. Little Rock, AR 72211 (479) 567-4257
Rogue Vapers 2
2917 Lakewood Village Dr. North Little Rock, AR 72116 (501) 420-1792
both locations open 10am-7pm 7 days a week www.RogueVapers.com
*Arkansas Licensed E-Juice Manufacturer*