CureAP-4 (@CureAP4) header
CureAP-4 (@CureAP4) profile picture

CureAP-4

@CureAP4

The Cure AP-4 non-profit organization was founded in 2016 by families of two of the known SPG47 patients.

 Newburyport, MA
cureAP4.org
Joined November 2016
  • Tweets56
  • Following62
  • Followers106
Thankful for these girls! #lucky #inclusion #curespg47
Image from CureAP-4 (@CureAP4)
Image from CureAP-4 (@CureAP4)
2
1
14
Five-Year Old BFFs Share Devastating Rare Disease; Spur Intercontinental Research Offering Hope to Families #rarediseaseday2019 #ShowYourRare #curespg47 prnewswire.com/news-releases…
Five-Year Old BFFs Share Devastating Rare Disease; Spur Intercontinental Research Offering Hope to...

Five-Year Old BFFs Share Devastating Rare Disease; Spur Intercontinental Research Offering Hope to...

/PRNewswire/ -- Rare Disease Day, February 28th 2019, is the one day when those affected by a rare disease, depleted of support, direction, and optimism, rely...

prnewswire.com
2
8
A much needed vacation for these two hard-working girls! We’re so lucky that we were able to overlap our vacations and spend a few days together at the happiest place on Earth! #youvegotafriendinme #curespg47 🏰✨
Image from CureAP-4 (@CureAP4)
Image from CureAP-4 (@CureAP4)
1
7
facebook.com/123141953691508…
Image from CureAP-4 (@CureAP4)
Image from CureAP-4 (@CureAP4)
1
9
Molly has recently taken an interest in ballet, but it has been a challenge finding a dance class for her due to her physical limitations. So - we brought ballet to her! We installed a ballet bar and mirror in her playroom and a family friend came over and taught her ballet!
1
9
Many thanks to Doug Pederson for having dinner with Kevin and some of the members of @RivertonCC as part of a donation from our 1st ‘Golf for a Cure’ outing! If you would like to be a part of our 2nd annual event by playing or sponsoring, please visit rivertoncc.com/curespg47
Image from CureAP-4 (@CureAP4)
1
SPG47 causes extreme weakness in Molly’s legs and she works so hard each and every day to get stronger. Bending down to pick things up from the ground may seem simple to most, but this is a HUGE accomplishment for Molly!
4
19
Cure SPG47 Fundraiser tomorrow at Kendra Scott in Ardmore, PA at 5pm! 20% of proceeds will be donated. You can also order via phone (610) 726-1838. facebook.com/events/16608784…
Kendra Gives Back in Ardmore, PA on Jan 17, 2018

Kendra Gives Back in Ardmore, PA on Jan 17, 2018

Event in Ardmore, PA by Cure AP-4 on Wednesday, January 17 2018

facebook.com
“If you can’t fly, then run, If you can’t run, then walk, If you can’t walk, then crawl, But whatever you do, you have to keep moving forward.” -Martin Luther King Jr.
Image from CureAP-4 (@CureAP4)
2
15
@NaminaForna - heartwarming and exciting! boredpanda.com/my-toddler-da…
My Toddler Daughter And Her Bff Are Fighting The Same Ultra-Rare Disease And Have Been Given An...

My Toddler Daughter And Her Bff Are Fighting The Same Ultra-Rare Disease And Have Been Given An...

When my four-year-old daughter, Robbie, and Molly Duffy met in person last year, they were the only two people in the United States with a diagnosis of SPG47, and just the 10th and 11th in the world!...

boredpanda.com
What a great segment @KerryKavanaugh (an old friend of Kasey’s from #Medford) and Boston 25 news did on us tonight for their 6pm news! Even better- if you missed it you can see it again at 10 PM! Set your DVR if you’re an early bird! #Boston25 #CureSPG47 #DoubletheGoodSPG47
Image from CureAP-4 (@CureAP4)
4
11
Today is #GivingTuesday! An Angel Donor is willing to match any donations up to $100,000! Help us turn $100,000 into $200,000 gofundme.com/DoubletheGood #keepthemwalking #curespg47
1
6
7
On 9/12/17, we hosted our 1st Golf Tournament and were able to raise $227,612! It was an incredible day! #grateful youtube.com/watch?v=a-AyuY2G…
Cure SPG47 "Golf for a Cure"

Cure SPG47 "Golf for a Cure"

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

youtube.com
3
Please share to help change the future of the children affected by SPG47. gofundme.com/ResearchforRobb… #ResearchforRobbie
3
2
May has been exciting! It's SPG47 awareness month in PA and Molly is Hero of the Month from @kidswishnetwork! @JeffChirico @RoseMinutaglio
Image from CureAP-4 (@CureAP4)
Image from CureAP-4 (@CureAP4)
3
6
Replying to @KaseyEdwards47
@KaseyEdwards47 teapaw.org/alex_doune/status/8622…
Alexandra Davies (@Alex_Doune) profile pictureAlexandra Davies@Alex_Doune10 May 2017
Transatlantic discussion about AP-4 yesterday with Darius Ebrahimi-Fakhari @BostonChildrens & Jenny Hirst @CIMR, connected by @CureSPG47.
Molly had her first Horse Show this morning. She rode in 4 different sitting positions, including backwards, and won in her class- so proud!
Image from CureAP-4 (@CureAP4)
Image from CureAP-4 (@CureAP4)
Image from CureAP-4 (@CureAP4)
4
vector.childrenshospital.org…
4
2
Check out this girl RUNNING! Makes my heart happy. #curespg47
3
1
12
Load more