Project Alive @Projectalive
501c3 funding first gene therapy clinical trial for Hunter Syndrome with your help. Save kids from a rare, terminal disease that steals them by their teens. projectalive.org Joined February 2011-
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The third annual Team Finn + Mario's for Project Alive event raised just over $30,000 for Project Alive!!! ššā ā Thank you to everyone who came out to support the cause, especially our silent auction winners (whoā¦ instagram.com/p/B4OBolYJ0QT/ā¦
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Together we can make a difference! Caregivers/patients, PLEASE take the toileting abilities survey NOW! Only open one more week and this data is CRUCIAL to saving our kids! {Link in Profile} join.backpackhealth.com/huntersyndromeā¦
Backpack Health and Project Alive Partner to Advance Hunter Syndrome Research bit.ly/33G0fGJ #Research
#TeamGio hosted a Glow Run earlier this month and raised $1000 for @Projectalive and the mission to #endHunterSyndrome!ā Thankful for the communities across the country fighting for our boys!ā ā #glow4Gio #glowpartyā¦ instagram.com/p/BzLWIgXpbyH/ā¦
{Meet Hudson}ā ā Hudson Roman, age 8 is part of a big special family including mom Becky, dad Joel and sisters Faith, Audra, Gabe, Poppy and younger brother Brooks. ā ā Hudson was adopted at birth by the Romans (hisā¦ instagram.com/p/By-F4NFJzvl/ā¦
My dad is special because: __________ā ā Heās fighting to keep me ALIVE.ā ā #happyfathersday ā #morefathersdays #hfd #fathersday #projectalive #helpnoah #endHunterSyndrome instagram.com/p/Byx-Ggmpe4m/ā¦
FOUR years ago this video put Project Alive in motion. Four years of believing, fighting, fundraising, collaborating, supporting one another. Watching this now and seeing the precious faces of angels gone too soonā¦ instagram.com/p/Byl3mZ9pJPf/ā¦
Holding our boys close and fighting to give them the chance to grow up.ā ā #neverwanttomisshim #moresnuggles #morekisses #moredays #achancetogrowup #projectalive #endhuntersyndrome #caringforcarter instagram.com/p/ByZ52BXAyYt/ā¦
Whoa!!! Thank you @TowneMeadows! What incredible support for #teamtosh and his Hunter brothers!ā #Repost @TowneMeadowsā ć»ć»ć»ā $17,000 for @Projectalive thanks to our amazing community! Thank you to everyone that woreā¦ instagram.com/p/Bx08nedjGv3/ā¦
Safety studies nearing completion in gene therapy drug trial bit.ly/2EcuhGO #Research
Shirts have started arriving!! š If you're still waiting, though, please be patient and know that our partners are fulfilling orders as fast as possible and have even overnighted some š¤š½ā¦ instagram.com/p/Bxcpaiup11V/ā¦
Kids with Hunter Syndrome require WEEKLY infusions to keep their bodies ācharged.ā Each day there is a little bit less enzyme in the body, and after 7-10 days very little is left. Tooā¦ instagram.com/p/BxbD3EvJZYw/ā¦
Motherās Day//ā ā If Iām being honest, this day is hard. I often find myself oscillating between celebration and fear. While I try to celebrate my role as a mother , I also worry that thisā¦ instagram.com/p/BxX2-BqJ_nE/ā¦
To the moms sitting in the hospital room right now, ā to the moms that heard their childās diagnosis the first time this week, ā to the moms that fill their weeks with appts and therapiesā¦ instagram.com/p/BxVNw0yJVt-/ā¦
Kids with Hunter Syndrome go through weekly pokes. Itās no fun, but itās the only way to get the missing enzyme into their bodies. ā ā Some kids will get a poke to allow an IV to beā¦ instagram.com/p/BxS75C-JZl2/ā¦
Spencer is all smiles for the month of May. Sure, some people may call it āMayhemā or āMaycemberā since itās such a crazy time of year, but seeing and celebrating such precious milestonesā¦ instagram.com/p/BxSZhR8J9Y0/ā¦
Anyone else fighting those Monday blues with some daydreaming of summer days!?! āļøššš»āāļø
How amazing is this?!? #Repost nkanney ć»ć»ć» What a successful morning!! The kids raised $2,750 in about 3 1/2 hours! A huge thank you to our wonderful family, friends and community whoā¦ instagram.com/p/BxFft59pvBb/ā¦
Did you know Hunter Syndrome is one of approximately 11 different disorders that make up MPS/ML category of disorders? MPS disorders are characterized by the bodyās inability to produce a specific enzyme, which leads to damage throughout the entire body. #mpsawarenessday
While most superheroes are out fighting crime, our superheroes are fighting for their LIVES!ā ā Show your support on #nationalsuperheroday and help these superheroes fund their cure! Text ALIVE to 91999 to be a hero!ā ā #projectalive #endhuntersyndrome
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