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.
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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/hunt…
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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 body’s inability to produce a specific enzyme, which leads to damage throughout the entire body.
#mpsawarenessday
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While most superheroes are out fighting crime, our superheroes are fighting for their LIVES!⠀
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Show your support on #nationalsuperheroday and help these superheroes fund their cure!
Text ALIVE to 91999 to be a hero!⠀
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#projectalive #endhuntersyndrome
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Sebastian turns FIVE on Saturday. His birthday wish will make you smile, but his parents just want to keep him ALIVE for many, many more.
Text ALIVE to 91999 to donate now!
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Our team is on their way to San Diego for #MPS2018! We can't wait to catch up on all the science and also visit with our #HunterSyndrome #MPSII family at the breakout session Friday evening (8/3) from 6:30-9:30pm.
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Proud of our President @melissajhogan moderating and speaking at the Nashville #RAREontheRoad. Check out the hosts of this great event @GlobalGenes and @EveryLifeOrg - #raredisease powerhouses
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Friends and followers, we’re now (finally) @projectalive on Twitter just like we are on Facebook and Instagram.
When you want to tag or DM us, remember that our handle now matches our name!
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We love the #NBA but we’re a bit divided. Noah is head over heels that the @warriors are up two games, and Case is rooting for his mama’s hometown team the @cavs. We’re doing #whateverittakes to fund a cure and seeing the #strengthinnumbers as people come together for #15foracure
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Thanks @mcuban for your $250K donation to #ProjectAlive in honor of Simon Ibell. We're touched you'd honor Simon's legacy in this way and propel us closer to saving kids' lives THIS YEAR. We're loving this throwback to the @dallasmavs 2011 NBA Championship with Simon!
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Case Hogan will be cheering on the @cavs tonight! While the @cavs are doing #WhateverItTakes to bring the NBA championship back to Cleveland, Case and his Project Alive family are doing #whateverittakes to find a cure for Hunter Syndrome. #15foracure #GoCavs #NBAFinals
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Could you serve these families who are fighting for their kids’ lives by sharing about #MPSAwarenessDay today, RT, donate at ProjectAlive.org?
Could you take 7 min to watch and share this video, on this, our biggest day of the year?
vimeo.com/269426914
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Twitterverse: Is your name Jack? In honor of #MPSAwareness Day today, could you RT to share with the world about another “Jack”?
vimeo.com/269426914
#raredisease #HunterSyndrome
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Celebrate Mother’s Day with purpose. Help these moms save their kids. Text ALIVE to 91999. #15bymay15 #15foracure #moremothersdays #mothersday
The #15byMay15 push is bringing out all kinds of creativity! Check out this local business from Charlotte, NC doing their part to spread the word!
#15byMay15 #projectalive #endHunterSyndrome
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The fifth and final documentary of our short documentary series will be released this weekend, in honor of Mother’s Day. Stay tuned for details on the release. Until then, catch up on the first four stories at buff.ly/2KJPMAA or Facebook.com/projectalive/vi…
#15byMay15
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Researchers have developed a gene therapy drug they believe will correct the problem at the cellular level for boys with Hunter Syndrome. Your $15 donation will help fund the clinical trials and help save lives. #15byMay15 #endHunterSyndrome
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Jenn & Mario went into parenting focused on giving Sebastian every chance to become whatever he wanted to be when he grew up. Now, they’re fighting to keep him alive. Watch their story here: bit.ly/2FEAnxx
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What if $15 could cure a disease? Give #15byMay15 to give kids with #huntersyndrome a chance to grow up. Donate at projectalive.org today and ask 5 friends to join you.
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We’re so grateful to the students and clubs at @AHPrivateSchool who are supporting our mission at #ProjectAlive with their passion and incredible ideas! youtu.be/33ArmYBKvq4
Last week at @WORLDSymposia, we met with pharma and biotech companies, patient advocacy groups, and relevant service providers. We heard new science, saw incredible results, and felt pangs of disappointment. It is all that which urges us on toward a cure for #HunterSyndrome.
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We were honored to be featured on @thecwsandiego this morning talking about #HunterSyndrome, #ProjectAlive, and #genetherapy
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2017 Milestones achieved by YOU and #ProjectAlive:
1. You gave over $100K on #GivingTuesday
2. You gave over $1M in 2017
3. We signed $1.4M gene vector mfg agreement
4. FDA approved IND for clinical trial
2018 is the year of the cure!
#HunterSyndrome #genetherapy #raredisease
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We’re so close to crossing the $1M threshold in 2017!!!! Help us reach $1M toward #genetherapy before the ball drops by texting ALIVE to 91999 or by donating on FB with *no fees* at: m.facebook.com/donate/530680…
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We’re so thankful for all of the @NBA players and legends and the guys at @NBAonTNT for getting behind #HunterSyndrome awareness and our work to fund a cure!
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It DOES work. Trial design was not ideal. Age equivalencies instead of normed cognitive scores should have been used as endpoint. Secondary endpoint data, yet to come, will include age equivalencies. Also patient level data has greater clarity in a disease like #HunterSyndrome.
The response of the #HunterSyndrome community. $SHPG also has a follow-on program of a BBB-crossing enzyme AGT-182.
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Clinical Trial Alert from #ProjectAlive regarding Shire $SHPG #SHP609 release of top-line data for #raredisease #HunterSyndrome
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Don’t miss our president @melissajhogan on #GoodDayDC at 9:40am ET TODAY! Watch on @fox5dc #raredisease #rarevoice #projectalive
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Tune in to @TheDoctors this THURS 9/28 for the @ChrisHogan360 and @melissajhogan family talking about #HunterSyndrome and @savingcase
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Great discussion about best practices for #raredisease patient advocacy group and industry interaction at #2017GG… - crowd.cc/s/15WOg
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Case and I are on our way to the airport to fly to #2017GGSummit! Why is Cade coming? You'll have to find us and… - crowd.cc/s/15vU8
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Will have a few super soft #ProjectAlive shirts and enamel pins for the first few people who can find me at #2017… - crowd.cc/s/15q8Y
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Our Pres @melissajhogan just did 300 jumping jacks for the donation that pushed us over $450K #projectalive #jumpingforgenes
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Imagine if everyone watching #GameofThrones took 2 mins to watch, gave $1 to save kids by texting ALIVE to 91999. youtu.be/ZGLgBBXyDCc
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@JeffBezos It only takes $2.5M to CURE Hunter Syndrome. We've been funding this for 5 years now and we need you. youtu.be/lW_v4vGFJ8o
@SusannahFox @lisamjarvis @eperlste @DavidAdamsCFP @Cimorelliband Take the #MPSChallenge! ProjectAlive.org
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When you're dropped in a #raredisease pool, and have to learn how to swim. TRAILER for #ProjectAlive youtu.be/ZGLgBBXyDCc
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"There was a day ... when I was just like you." WATCH ---> trailer for #ProjectAlive documentaries youtu.be/ZGLgBBXyDCc
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Run for #HunterSyndrome gene therapy! If you are in the Stratham, NH area, sign up at ActionforAidan.org for this 5/20 run!
Patient engagement (I define: transparency, compassion, commitment, partnership - savingcase.com/blog/2012/04/…) starts at the top! #Patients2017
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@ClevelandClinic Patient Advisory Council helps redesign cancer treatment room, menu, art therapy, wig display #Patients2017
High priority on patient experience has its own ROI / HT Rachel Taliercio of @ClevelandClinic #Patients2017
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Health systems, hospitals, medical schools, #clinicaltrial sites, do you teach empathy? #Patients2017
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Wearable tech in Parkinson's disease from @MichaelJFoxOrg - So exciting and promising for many diseases! #Patients2017
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How does your #pharma company collect and analyze patient experiences and preferences? Suggestion from #Patients2017
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Reps from BMS, Takeda, Merck and patient advocates talk about what patients actually want #Patients2017
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Theresa Mullin of @US_FDA - always consider what you're looking to get out of a meeting or process #Patients2017
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Theresa Mullin of @US_FDA - some reviewers' whole perspectives changed as a result of PFDD meetings #Patients2017
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Richard Moscicki at @US_FDA - what patients share about disease esp benefit-risk is different than what we hear from experts #Patients2017
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"Engaging patients is not just a goodwill gesture anymore." / At some companies, it was, at some, still is. #Patients2017
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Michelle Vichnin @Merck describes #clinicaltrial development with and w/o patient centricity #Patients2017
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As a caregiver who did 4 years of monthly (3-9 days/mo) out-of-state clinical trial visits, I see benefit here. #Patients17 @SanofiGenzyme
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The evolution of patient advocacy has shifted its role from a commercialization function to a preclinical one. #Patients17
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#CuresNow will save lives. @SenBobCorker and @SenAlexander - be a hero to kids like Case! #CuresRally
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TY to @ChiveCharities @GlobalGenes for granting this family an accessible van and bike for their daughter w/ #spinabifida! #GGTribute2016
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Watching @MadisonMcLaugh present an Rare Champion of Hope award at #GGTribute2016. TY Madison! #raredisease
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In #RareDisease advocacy, we've learned that it is far better to give than to receive. - honoring Nancy Harris at #2016GGSummit
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Congrats to Elizabeth Linton of Sanfilippo Children's Research Foundation for her Rare Champion of Hope award! #2016GGSummit
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Congrats to @EmilysEntourage and Gina from @utahrare - winners of Champions of Hope in Advocacy at #2016GGSummit, awarded by @mariannapalka
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Standing room only at our #2016GGSummit breakout on effective social media engagement in #raredisease!
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Don't forget to walk down this hall at 2pm to Track 1 for my session with @RarePOV about effective social media engagement #2016GGSummit
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Precision medicine and how #RareDisease patients can engage - at #2016GGSummit with @mattmight @emilykg1
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