HOW CF FUNDRAISING CHANGED MY LIFE!
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- Опубліковано 1 лис 2019
- Vlog 11.1.19 - It brings me to tears to think about it!
Donate to Hannah's CF Ride → fightcf.cff.org/site/TR/Cycle/...
Visit our Online Store → thefreylife.com/store
Yesterday's Vlog → • EMOTIONAL OVERLOAD FRO...
See what we were up to in years past! ↓↓↓
1 Year Ago → • DON'T WASTE YOUR LIFE!...
2 Year Ago → • 🏥 WHEN YOUR HEALTH DOE...
3 Years Ago → • FIRST HOME IVIG INFUSI...
4 Years Ago → • IT'S CHRISTMAS TIME AL...
5 Years Ago → • CYSTIC FIBROSIS INPATI...
Subscribe to our channel → goo.gl/LvdRdF
→ We post new vlogs everyday showing daily life with #CysticFibrosis!
↓↓↓ Learn more about The Frey Life ↓↓↓
What is Cystic Fibrosis → • WHAT IS CYSTIC FIBROSIS?
Draw My Life (the backstory) → • DRAW MY LIFE - CYSTIC ...
Service Dog Q&A → • SERVICE DOG Q&A
Cystic Fibrosis Q&A → • Cystic Fibrosis Q&A!
Are We Having Kids? → • Q&A - ARE WE HAVING KI...
Peter is a pastor & posts weekly sermons on his channel here → / livingwithhopepodcast
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OUR CAMERAS (affiliate links) ↓↓↓
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Other affiliate deals for things we love! ↓↓↓
AirBnB ($40 off your first booking) → airbnb.com/c/pfrey2
Ibotta ($10 signup bonus) → ibotta.com/r/nfwkgca
Ebates ($10 signup bonus) → ebates.com/r/PETER378
Intro Music: "Breathe" by Ruby Amanfu
• New Song - Breathe I R...
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It’s humbling to have people rally around me in this fight- to ALL who have come along side us in the fight- THANK YOU!
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Glad to be here! LOVE you guys 😁❤❤
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Love the Purple hair. My daughter does her hair this time a year also. For Christmas, Lupus Awareness, and Epilepsy Awareness. Love ya'll 🙏
The Frey Life why can’t Peter be a pastor anymore?
Awwwww......Ollie is so sweet! Making sure that Hannah is settled in her room and being the perfect little fur-host! 🤗❤️❤️😘🐶
I love you Mary and Peter and don’t think I forgot about you too Ollie Boy💜💛Ya’ll are incredible! God bless, The Frey Life.
Wow I totally freaked out I thought Mary was driving and was freaking out that you were talking to hannah and not paying attention to the road. My heart was was pounding.. Then I heard Peter talking. Now I can breath.
Yes, Mary, they did have a place for the icing in the cinn mini box years ago. I remember. Awww that's sweet of Ollie, being with Hannah.
Awwwww hannah and Ollie loving on each other..the sweetest have fun with your friend cant wait to watch Tomorrow...💜💜💜
So happy for you, we lost a special girl in the family when she was 16. I hear you get stronger now! God bless you both!
So fun watching Mary and Hannah playing beauty shop! For just a bit I thought Mary was driving back from the airport until she quit looking at the road!! Accckkkkk!!
I love it when Ollie is tilting his head every time you guys talk to him. It is so pure. 💚
Talked about the Frey Life today at my Lay Missionaries of Charity meeting. All of the other members love how you to have joy even in facing CF.
Gorgeous flowers. Hi Hannah!
So happy you weren't affected by adverse weather conditions. It is wonderful having such an awesome guest area always ready on the top floor. I remember the purple hair last time.
It’s SO ABSOLUTELY BEAUTIFUL to see that u “VERTEX Trikafta can” Mary!! Goodluck for ur ride Hannah!!!
I want to see the highlights in Mary's hair.
Love you guys. Mary I support you 100 percent on this cause and Peter I absolutely love the podcast. Helps me out a lot as I’m currently in the hospital now.
Just a head up for you guys! The milk, which from the jar looked like it is from Maple View Farms. Maple View is a local farm located in Hillsborough N.C., which depending on where you are in Durham is about 20-30 mins away! They make everything fresh and even have a little store on the farm where they sale ice cream that was made there as well as the milk! Maybe y’all would like to check it out! They also offer tours of the farm as as whole! But, when you finish the milk you can return the glass jug to them and they’ll recycle it by cleaning them really good and reuse them for more milk!
Totally awesome! Happy for you Mrs Mary. Stay blessed..
Cini-minis ROCK! Well, at least if they're still warm they do.
P.S. You make my day!
Great to hear there was positive stuff yesterday, and hmmmm the beige handles are a mystery ... you are too funny!!! Thank you for introducing us to Hannah and telling us about your friendship!!! We should all be so lucky to have awesome friends like her !!!
I am so so happy for everyone I know with CF and how Vertex can change there lives! However just to be raw and honest I will say I have been feeling so bittersweet. It is a bit difficult to see so many people improving (which again is SO great!) but to be yourself getting sicker and suckers and having a condition (and co-morbid conditions) that are orphan diseases (meaning unknown, almost no funding, and extremely rare). The majority of healthcare professionals (doctors and nurses) literally have no idea what my condition is and Google it. I am in that boat right now which feels like it could capsize at any moment. I am 20 and instead of college I am thinking about how many experiences can I get in before I pass away relatively soon and why I am being told over and over by doctors science is just wayyyyy to far off for what my body needs and the advancements I need. Again I am SOOO happy for you, but it has brought up some mixed emotions for me.
Great Vlog! I loved your flower arrangment Mary. It reminded me of Fireworks. There's nothing like two girlfriends reuniting.
Just loved this, Ollie is so loved!!
Vertex is an amazing example of how amazing fundraising is and how it truly can make a difference even if it doesn’t feel like it in the moment. Love your family! ❤️
You guys are awesome all three of You great what Hanna and You too Mary did for CF God Bless
Thanks for telling time you post your podcast. I asked that question after watching your podcast a while ago. 🙏🏻
The cuteness of it all I can’t help it 💜💜💜💜💜
Peter! You did great. I’ve enjoyed the podcast the last 2 days. I’m actually going to use your podcasts as my daily devotions. Looking forward to what you bring. Yes! Please keep them going up very early. I do my devotions at 5:30am pst.
Yes! The Cini Minis came with a little spot on the lid where you could put the icing container in!! I haven't had them for years! But I do remember them being a little hard.
Peter I would like your podcast to be an hour it’s so good.
💜💜 I’m very jealous of those Ollie hugs Hannah is getting. 😁
Youre podcast is great Peter 🙏
I love Ollie in his business suit and bandana tie!
I remember you with purple hair Mary!
Keep fighting chronic illness warriors! As a healthy person I can only imagine the struggle and I'm so proud of you all every day:)
Hannah seems so sweet. I'll bet she feels like she's in a high end hotel up in that attic suite you two put together. 😃👋
Mini is cute, so Mary must love the way japanees do mini things too. Have fun guys
This is a really cool thing to watch while finishing up a paper for my biotechnology course, and I am writing about CF and biotechnology! After doing all this research, what Vertex has been doing is SO. DARN. COOL. Like it was cool to begin with but its like .. super duper cool. This topic of course was inspired by you and seeing how Trikafta has changed your day to day life.
I have to share the start of my paper
This paper will explore Cystic Fibrosis and how in the last decade biotechnology has made life changing strides for those with the disorder. Thirty years after the defective gene causing cystic fibrosis was found (Riordan et al., 1989), the FDA approved a drug that targets the responsible gene for 90% of the CF population. (U.S. Food and Drug Administration, 2019)
I left the references in there cause it just looks really cool and official like that.
Mimi Hrafnkels I’m sure your paper will get an A
Loving the new house vlogs keep it up Mary and Peter
Hi, I love your videos!
I hope Hanna had a great ride this morning! Shavua Tov Guys! xxxxxxxx
When you said, Ollie should we go get Hannah? I was like, uh yes please come get me!! I would love to meet you guys!! Also I’m so happy for you 💜💜💜 The other Hannah sounds like an amazing person!
Y’all trying NC food or just food in general makes my day. Lol
Your Podcast is amazing. I'm enjoying it very much.
Thumbs up to Hannah for getting involved.
Hi Guys , wow , I can`t believe it has been a year since I watched Mary and Hannah colored there hair in a vlog last year. Peter , I think your podcasts are going great , thank you again. I think Hannah really likes Ollie , so kind of you to offer your home to her , so glad you are friends.
Thanks for the vlog and did I hear you say 'stale cinnamon rolls' ?? They are great warm with the icing !! , but I like the ones in a roll you bake !!
Take care , CU tomorrow , Gary
Hit's like before watching, always❣
Of course! Is there another way? :-)
@@Judymontel Nope ; )
Beth Bootsma ditto! Even if there's loud chewing lol
Wow! Did your friend Hannah participate in the San Jose, CA CF walk several years back on a team with a family of four and a dog. She seems very familiar and when my family did the walk we had two Hannahs join our team. What a coincidence if that's the same Hannah. Say Hi from The Redman Family!
I love the purple hair. Purple is the color for Lupus too!
I am laughing now that I realize Mary ia not driving....At first I thought she was and it was scaring me because if how much her eyes were not on the road....Big sigh of relief...lol lol
I love when you dye a section of your hair purple. :)
Hi, I can’t believe your channel isn’t to 1,000,000 subs yet, but I do love this channels communti
For sure, it doesn't cost any thing to subscribed people, so if you watch hit that button, it helps Mary and Peter.
I thought the cinni-minis were discontinued. I guess they are back. We used to get them all the time 10 or so years ago.
😆 Me immediately searching for broccolini on Internet haha 😆 how did I not know about this?
Ollie loves his friend Hannah...❤
I can't find the podcast on Google podcast can somebody help
Mary and Peter I love y'all so much and I love Oliver boy too and love watching y'all all the time
Yes
I need to say something... I'M SO JEALOUS OF HER GETTING TO HUG OLLIE !!! xD
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I am really enjoying your Peter!!
who wouldnt want to be friends with mary. i mean come on such an amazing person and peter and ollie too. just amazing what they do for people they dont know. that why. 👏❤️😀🙏👍💪
Thumbs up #316!!🦋
I watched a channel yesterday of a girl who has CF and cannot take the triple combo because it causes her liver enzymes to increase!😥 Wow, I am so thankful that you are thriving.❤ #davesandersstepdaughter 💙
I worked at Burger King for a while and I never knew cini-minis were a thing until I had a customer ask for them. I’ve never had any though.
Mary, did that oatmeal turn out to be good?? The one you were trying...
"Here's a picture."😄
I love Hannah's nails
So Hannah is the first official guest in the room upstairs. We won't count the two that helped you with the move.
I have that same stuff!!!😝😝 same color even😁😁❤
Mary! McDonald's has cinnamon bun things too that are BANGIN.
I thought they stopped making those?
@@BookLoverrr23 we still have them in VA!
I just dyed my hair purple
For CF awareness?
No talk about dying. 😞
Burger King debuted the Cini Minis in 1998. I had to look it up. It was bugging me, lol.
Mary you didn't show us your hair
Beauty flower arranging marry 💐
Hi Mary and Peter ♥️♥️
Mary! You have to try Cinnabon delights from Taco Bell! They are cream cheese filled cinnamon balls! Very tasty😋
Hey mary...this isn't really related to the video but are you aware of any organizations that help children with CF connect with each other? Like become a pen pal of sorts. I know many with CF really can be with anyone else that has it so its difficult on little ones to have and make friends with kids like themselves especially even online as it's not ideally child friendly...something as such would be awesome if it doesn't already exist.
That Burger king has a bigger variety than mine.
warm up the ciniminis...they are better
I need to stay with you guys in NC. I've been watching since 2015 at least. Just such a warm loving couple
When is that tv gonna get hung?
I think they needed to get a longer tv table.
@@denisejones7780 maybe.......
Olie is such a good hostess !!!