The Alle Shea Project @Allesheaproject
Advocate for Osteogenesis Imperfecta (OI) aka brittle bones in memory of my daughter Alle Shea that passed away from OI after 5 weeks of life. allesheaproject.org Irondequoit, NY Joined May 2013-
Tweets6K
-
Followers303
-
Following531
-
Likes5K
My Christmas wish is for my followers to share this video to help raise awareness of the rarer brittle bone disease Osteogenesis Imperfecta! Merry Christmas!!! youtu.be/BxRC-hk3YhI?si…
Merry Christmas to everyone from The Alle Shea Project!!!
Almost 1yr old Ella with her sister's lilac bush donated by the wonderful Golisano Children's Hospital NICU nurses and now 12 1/2yr old Ella with her sister's Butterfly at Grace’s Garden located at the Golisano.
I want to share a message I received from the CEO of the OI Foundation!! Feeling very proud! #KindnessMatters #inspired #goodnews
Dear Alle, May 21, 2009, at 11:07 am on this bench at Golisano Children's Hospital we held you as you went to heaven, please know we did all we could. A part of us died with you that day. I can still feel you in my arm, I am proud to call you my daughter, we all love you!
Not looking forward to tomorrow. May 21, 2009, we made the heartbreaking decision to take Alle Shea off life support. It was also the first and last time we held Alle without cushions and padding between us. she opened her eyes one last time and saw her proud parents. we miss u
What an amazing voice! She will go far!! #tallent #singer #torikelly
What an amazing voice! She will go far!! #tallent #singer #torikelly
6 years ago I was one of the grand prize winners of Kwik Fill Sounds of Christmas contest, I won over $2,000 worth of musical instruments. I decided to use them as raffle items to raise money for the OI Foundation!!! #oiawerness #brittlebones #OIAwarenessWeek #MyUnbreakableStory
If you are unfamiliar with Osteogenesis Imperfecta, here is some info
I share Alle's xrays for the first time in 14 years. I do this for OI Awareness Week, when I first saw them my heart just broke, my baby was so broken. This is OI the rare brittle bone disease.... At birth, Alle had broken ribs, arm, wrist, legs, and her skull was fractured
An OI parent will understand!!! Can you imagine having to have a letter from your DR to say you are not abusing your child
Day 2 of OI Awareness Week @News_8 Extraordinary People on the Snuggle Buddy care packages we send to kis with OI all over the world! Since this interview, we have sent 199 care packages to 41 states and 10 countries. youtube.com/watch?v=79JXL4…
I will try to do my best to give information about Osteogenesis Imperfecta for OI awareness week, first up Rodding sugery. many children may need this surgery children Who have curved bones, repeatedly break a long bone many at a very young age.
Happy Osteogenesis Imperfecta Awareness Week! #wishboneday #oiawarenessweek #roc
National OI Awareness Week begins on Saturday! @CityRochesterNY proclaimed May 6 - 13 as OI Awareness Week in Rochester For more information on how you can raise awareness and support the OIF this week, visit oif.org/awarenessweek. #OIawarenessWeek #UnbreakableSpirit
Tomorrow at 8pm I will be on Inspirational Talk with Toneal! I will tell Alle's story and how we are doing work in her name, I will give more details soon!!!
Your work continues Alle!! You are helping so many with your story and brave fight!!! #GoodNews #fundraising #oi #brittlebones
It was another successful fundraiser, hard to believe it's been 14 years since Alle left us after a 5-week battle against Osteogenesis Imperfecta the rarer brittle bone disease. We have never stopped keeping her fight alive and helping others with the same disease. @pulte
It was another successful fundraiser, hard to believe it's been 14 years since Alle left us after a 5-week battle against Osteogenesis Imperfecta the rarer brittle bone disease. We have never stopped keeping her fight alive and helping others with the same disease. @pulte
Today we are having our annual fundraiser to celebrate Alle's birthday and to help raise awarenes of the rare brittle bone disease Osteogenesis Imperfecta. Come to @UnoChicagoGrill in Webster to help...click link for more info allesheaproject.org/Uno-Dough-Rai-…
West Irondequoit CSD @WestIrondequoit
3K Followers 642 Following IG: west.irondequoit.csd 🦅Athletics: @WIEagles
Aaron R. Johnson @AaronJohnsonWI
2K Followers 652 Following Husband/Father/Superintendent of the West Irondequoit Central School District/Go 🦅 Eagles
Yklarvirp @Yklarvirp08594
16 Followers 1K Following
Gorbac @Gorbac7199521
20 Followers 1K Following
Caookee @Caookee288061
31 Followers 2K Following
OdeletteStrong @dtDal60dqKe5O
64 Followers 7K Following
Kautorsout @KautorsoutGsy
2 Followers 141 Following Each day is a new opportunity to reach that goal
Clara_Dupuis @ClaraDupui50412
87 Followers 5K Following
Nershau @NershaurfADX7
60 Followers 7K Following
Emma Dumont @02Fm9j64VWXTjM0
27 Followers 2K Following
Jini Jordan @JiniJordan
2K Followers 2K Following #Syngap1Mom #EpilepsyWarriorMom #CureSyngap1 Advocate
Humble Grace Love Inc... @1hglintlmentors
16 Followers 218 Following We're a 501-C3 nonprofit organization, equipping young black men, with God's love, challenging them to become their best version! https://t.co/jZVz9bL2wY
Suzanne Jones @Suzannevjones
2K Followers 2K Following Mother and #Syngap1 advocate working with SRF (Syngap Research Fund) to @cureSyngap1
Sandy Smith @sandysmith317
2K Followers 2K Following #RareDisease #SYNGAP1 auntie. Working for a cure with @cureSyngap1. Healthcare IT professional. Micah 6:8 💜#epilepsy💙#autism💚#id
Dan Harary Author @daniel_harary
1K Followers 2K Following Chairman/Founder, HollywoodDisclosureAlliance, Author, FLIRTING WITH FAME, CARROTS, AFTER THEY CAME, FIVE & MY PARANORMAL LIFE, Owner, AsburyPR Agency Bev Hills
Garcia Ramírez @grudy5642
83 Followers 817 Following
Michelle Carpenter @mcarpentera9911
0 Followers 46 Following
Kali Worth @WorthKali
1K Followers 1K Following Nurse turned rare disease mom to a #SYNGAP1 kiddo. @cureSYNGAP1 volunteer. Budding HR professional
Lindsay Shaughnessy @LSKindergarten
69 Followers 194 Following I have the two BEST jobs - mom and Kindergarten teacher 💗
Luther Layne for Cong... @LutherForNY25
124 Followers 751 Following Running for U.S. House of Reps in NY's 25th Congressional District. #Luther2024 Personal: @LeBronLayne
Rachel Dube @Rachel87Dube
7 Followers 53 Following I wish common sense was common Mum, Wife and Brittle Bone Society Supporter
Celaena Sardothien @_heiroffire_
167 Followers 899 Following ⚔️“One does not deal with Celaena Sardothien. One survives her.”|Adarlan’s Assassin & Fae Queen of Terrasen|6w7|#T1D|Your fave #sapphic ❤️🧡🤍🩷💜
Corey Baysden @CoreyBaysden
5K Followers 5K Following #RareDisease mom to Saylor w/ #Syngap1 🧬 Director of Community Activation @cureSYNGAP1 🧠Working 2 find a cure for #epilepsy #autism #hypotonia #nonverbal #ID
Opinion Health @OpinionHealth
1K Followers 4K Following A global patient-centred healthcare research firm based in London, UK. We work with thousands of patients and caregivers to understand real-world experience.
Kc4141111 @kc4141111
0 Followers 30 Following
Donna 🇺🇸🇮�... @dfarren
2K Followers 5K Following Distance & Virtual Learning Specialist. Adult Learning. Instructional Design. 585. Tweets are my own. #IStandWithIsrael 🇮🇱
Reliable Locksmith 24... @ReliableLock247
161 Followers 1K Following With 10 years of experience, our locksmith company has built a strong foundation that has helped us achieve & maintain our rightful spot as the # 1 locksmith.
denise munir @denisemunir1
41 Followers 129 Following I have my own haircare products, I love to dance and write
Uplifting Network @UpliftingNet
949 Followers 2K Following Your daily dose of uplifting news stories! Curated by the people for the people. #goodnews
PeteSpaker Podcast @PetespakerP
410 Followers 989 Following Twitter arm of the Pete Spaker Podcast. Pete has spent decades in entertainment, technology, policy and the crossroads where they meet. Try the PSP and see!
Pepper Ziccarelli @PepperZicc
85 Followers 137 Following
Steve V @WIMEO_VP
26 Followers 139 Following
Andrew Longhurst @Davros63
408 Followers 2K Following Hi I'm Andrew, I live in Sydney, have nerdly tendencies and am interested in technology, sci-fi, education, accessibility, psychology, vampires and gadgets! :)
D M Burns @dmburns214
56 Followers 177 Following We’re Parents, Grandparents, community volunteers/parent leaders with a passion for learning about “all the things”.
RARE Revolution Magaz... @RareRevolutionM
12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Melissa A.Miller @MelissaAMiller4
6 Followers 140 Following
Farah Jadran @FarahJadran
6K Followers 3K Following @KING5Seattle News Anchor. Blessed Mama. #BeYou 🇲🇽🇦🇫 | Wife of @nikotamurian. #Chicago #Seattle Sports Fan. 3:33 Marathon. #dogmom RT≠Endorsement
hypermobility.org @HMSACharity
12K Followers 7K Following Supporting people with connective tissue disorders or hypermobility related health problems, including but not limited to Ehlers-Danlos, Marfan & Stickler etc.
Brett Daly @Brett_Daly
115 Followers 333 Following Marketing professional. Sports fan. Rochester enthusiast.
JJWest @WestermanJeff
8 Followers 101 Following
Olley @OlleyLive
49 Followers 101 Following Happiness is when what you think, what you say, and what you do are in harmony.
danni @danni91105226
14 Followers 57 Following I’m a female and my name is Danni I love animals and I’m very creative and like to try new things
RedSprout Media @red_sprout
1K Followers 1K Following We work with brilliant marketing managers who want to reach more customers with engaging content 🚀 tweets: @OliviaRedSprout
NachoAguirreM @NachoAguirreM
3K Followers 2K Following Husband, Father and Baker. Food Network SpringBakingChampionship Season 4 WINNER 🥇 & FoodNetwork Judge Love Family, life, food & sweets
scottspezzano @scottspezzano
5K Followers 1K Following Morning show host of the Breakfast Buzz on 98.9 The BUZZ Rochester ,NY Opinions are my own!
Matt Spinner @MattJSpinner
626 Followers 604 Following Journalist (Former Technical Director & Assignment Editor), Newsie, Gamer, Lover of Cinema, Writer/Visual Storyteller, Roc Native.
West Irondequoit CSD @WestIrondequoit
3K Followers 642 Following IG: west.irondequoit.csd 🦅Athletics: @WIEagles
Buffalo Sabres @BuffaloSabres
929K Followers 399 Following Stop Hate. End Racism. Choose Love. The official account of the Buffalo Sabres. #LetsGoBuffalo
Aaron R. Johnson @AaronJohnsonWI
2K Followers 652 Following Husband/Father/Superintendent of the West Irondequoit Central School District/Go 🦅 Eagles
Mike Catalana @MikeCatalana
21K Followers 1K Following 13WHAM & Buffalo Plus YouTube Sports Director. Podcast: https://t.co/ZvgoNsJ4ei 500+ Bills games covered. Philly sports apologist. Never sarcastic.
SynGAP Research Fund ... @cureSYNGAP1
11K Followers 1K Following #SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 https://t.co/4UJNF5bKTl https://t.co/pjCrzqlbV7 🎙
RG&E @RGandE
5K Followers 296 Following Rochester Gas & Electric, subsidiary of @Avangrid, proudly serves 371K electric & 307K gas customers in a 9-county region centered on the City of Rochester
Mike Graglia 🌻 @JMGraglia
7K Followers 2K Following CEO @cureSYNGAP1 🧬 Pod https://t.co/9jkDkMg5R8 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
Jini Jordan @JiniJordan
2K Followers 2K Following #Syngap1Mom #EpilepsyWarriorMom #CureSyngap1 Advocate
Jon Moses @jonmosesvocals
177K Followers 11K Following 👨👧👦 Dad first | 🎭 Theatre Enthusiast | 🎤 Singer & Top 5 Charting Artist | 🌱 Wellness Advocate living with CPTSD , chronic pain | 📧 [email protected]
Ben Cameron @BenDoesBROADWAY
3K Followers 990 Following Hi, I'm your Broadway Buddy Ben. Writer, teacher, performer, host, theatre geek about town. I like you.
Sandy Smith @sandysmith317
2K Followers 2K Following #RareDisease #SYNGAP1 auntie. Working for a cure with @cureSyngap1. Healthcare IT professional. Micah 6:8 💜#epilepsy💙#autism💚#id
Suzanne Jones @Suzannevjones
2K Followers 2K Following Mother and #Syngap1 advocate working with SRF (Syngap Research Fund) to @cureSyngap1
Kali Worth @WorthKali
1K Followers 1K Following Nurse turned rare disease mom to a #SYNGAP1 kiddo. @cureSYNGAP1 volunteer. Budding HR professional
Jess Fares @Cure_Cole
2K Followers 2K Following Mom to Cole, diagnosed with #SYNGAP1. Working hard with @curesyngap1 to improve lives of those with #epilepsy #SIB #autism #hypotonia #ID and their families!
Marta Dahiya, MD @SRFMartaMD
2K Followers 2K Following SYNGAP1 mother, physician & advocate working hard to #cureSYNGAP. Co-chair of the Board: @cureSYNGAP1 501c3. #SynGAP #loveaSyngapian
Rochester NY Police @RochesterNYPD
46K Followers 36 Following The Rochester, New York Police Department is comprised of 900 sworn and non-sworn employees serving approximately 210,000 city residents.
Rachel Dube @Rachel87Dube
7 Followers 53 Following I wish common sense was common Mum, Wife and Brittle Bone Society Supporter
Celaena Sardothien @_heiroffire_
167 Followers 899 Following ⚔️“One does not deal with Celaena Sardothien. One survives her.”|Adarlan’s Assassin & Fae Queen of Terrasen|6w7|#T1D|Your fave #sapphic ❤️🧡🤍🩷💜
Irondequoit HS @IrondequoitHS
1K Followers 66 Following
The585.com @_The585
5K Followers 3K Following Celebrating life in #Rochester & the #FingerLakes ⚡️ Follow for the best of #The585 • #ROC • #FLX
Corey Baysden @CoreyBaysden
5K Followers 5K Following #RareDisease mom to Saylor w/ #Syngap1 🧬 Director of Community Activation @cureSYNGAP1 🧠Working 2 find a cure for #epilepsy #autism #hypotonia #nonverbal #ID
Seth Rudetsky he/him @SethRudetsky
58K Followers 2K Following @DisasterMusical licensed by MTI! SiriusXM host,author of Seth'sBwayDiary & The RiseAndFallOfATheaterGeek! Host of #SethsBwayCruise 🚢LOVES dogs! He/him/his
Dan Gross @DJG_Music
1K Followers 521 Following Tommy Emmanuel told me: "We need more people like you in the biz." Reporter, @News_8. Capture artist at Bop Shop, Host @901Jazz, video at 3HB.
Bob Kiley @RobertWKiley
219 Followers 247 Following Husband and father of three. #fishing #hunting #outdoors. Deputy Director of Monroe County Parks. Tweets are my own. Go Bills!
JOSH NAVARRO 👑 @JoshNavarroTV
2K Followers 1K Following Storyteller-Witty 🎭 | Bilingual 🇺🇸🇲🇽🇨🇷 | Former TV Reporter W/ Investigative Edge : WPTV, WROC, KHSL, KVEO | @Floridastate Alum | Views are mine
Chunky Guacamoley! @GuacamoleyTweet
1K Followers 4 Following We invite you to stop by, every day, for a fresh and chunky scoop of distraction and hilarity. At Guacamoley, we never charge extra. We just ARE extra.
Uplifting Network @UpliftingNet
949 Followers 2K Following Your daily dose of uplifting news stories! Curated by the people for the people. #goodnews
PeteSpaker Podcast @PetespakerP
410 Followers 989 Following Twitter arm of the Pete Spaker Podcast. Pete has spent decades in entertainment, technology, policy and the crossroads where they meet. Try the PSP and see!
Stephania Bell @Stephania_ESPN
306K Followers 2K Following ESPN's injury analyst; physical therapist - Board Certified Orthopedic Clinical Specialist, Certified Strength and Conditioning Specialist. CA girl at heart...
ESPN Fantasy Sports @ESPNFantasy
732K Followers 181 Following
ESPNFantasyFootball�... @ESPN_ff
3K Followers 307 Following ESPN professional football analysis. Tag us in tweets for our opinion on who should be in your lineup. For quickest response make the tweet a SURVEY QUESTION.
Brian Cardilli (Pop I... @wberpopice
150 Followers 404 Following Teacher, secular humanist, Pop Ice on WBER, student of the world, traveler, reader, gamer, and primate.
Rochester 911 Calls @RochesterNY911
1K Followers 12 Following Covering 911 reports for Police Departments, Emergency Medical Services, & Fire Departments in Rochester, NY.
EmmettTillLegacyFdn @EmmettTill
52K Followers 4K Following Creating a legacy of hope & building a bridge from the past to the present & future in memory of Emmett Louis Till & in honor of his mother, Mamie Till Mobley.
MTFMODELS @MTFmodels
144 Followers 286 Following Mary Therese Friel, LLC | Professional Models & Talent | Complete Training Program | Est. 1987 | 585.624.5510 | https://t.co/FHacNcv2wN
Wayne Brady @WayneBrady
350K Followers 1K Following Guy who makes stuff up, pretends to be other people and sings.
James Armstrong @NerdyMrA
289 Followers 259 Following Husband, Father, West Irondequoit Social Studies Teacher, Vintage Volkswagen Enthusiast, Wendy's Chocolate Frosty aficionado, Multiple Sclerosis Warrior
Charlotte Proud @proudcharlotte1
4K Followers 3K Following Nursing Degree Apprentice (3rd Year/Mental Health) @CNTWNHS @sunderlanduni Living with a rare disease, Osteogenesis Imperfecta. Determined 💪🏻
RARE Revolution Magaz... @RareRevolutionM
12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Stephen Cook, MD, MPH... @DrSteveCook
4K Followers 5K Following Pediatrician & Internist @NationwideKids (THE Ohio State University) Obesity & Community Health #tweetiatrician @AAPHealthyWt
Pulte Daily @PulteDaily
63K Followers 1 Following
Team Pulte @TeamPulte
166K Followers 5 Following The 501(c)(3) Charity, inspired by @Pulte Twitter Philanthropy. We help other people!
The Pulte Family @realPulteFamily
271K Followers 24 Following 🇺🇸 The Power of the People 🇺🇸 #TwitterPhilanthropy. Ran by Members of The Pulte Family. Helping other people! ❤️
rerware @RerWare
7K Followers 0 Following
Farah Jadran @FarahJadran
6K Followers 3K Following @KING5Seattle News Anchor. Blessed Mama. #BeYou 🇲🇽🇦🇫 | Wife of @nikotamurian. #Chicago #Seattle Sports Fan. 3:33 Marathon. #dogmom RT≠Endorsement
D M Burns @dmburns214
56 Followers 177 Following We’re Parents, Grandparents, community volunteers/parent leaders with a passion for learning about “all the things”.
Taylor Swift @taylorswift13
92.9M Followers 0 Following And, baby, that’s show business for you. New album The Life of a Showgirl. Out October 3 ❤️🔥Trends for United States
You might like
