Today we're sharing Laramie's #INADSuperstar story. "INAD has stolen every skill Laramie has ever learned, but it has not taken her precious smile and laugh. It is incredibly tough on her as it affects every single part of her body. She is a fighter and will continue to be the strong girl she has always been." Keep smiling and keep laughing Laramie! We are #workingonamiracle for you and all children afflicted with PLAN! https://inadcure.org/mission/superstars/laramie-a/ #cureINAD #INADcure #INADSuperstar
Aj toto je INAD. Najprv výživa PEG-om a potom sladké vychutnanie si lízatka. 🫣 Bolo, že to radosti 🤗. #inad #inadobdarenychlapec #inadcure # #grandmaandgrandson
Worldwide, 400 million people are living with a rare disease. In the US, that's an estimated 25-30 million individuals (NORD). In Europe, that's estimated to be 30 million individuals (EURODIS). #INADcure #raredisease #workingonamiracle
Mother's Day is fast approaching. Check out our merchandise to find the perfect gift for Mom. https://inadcure.org/shop/ #MothersDay2024 #INADcure #workingonamiracle
A BIG Thank You to Abigail Marie Smith, Alexi Cheramie, Alexi Deville, Cori Jones, Deb Lancaster, Dee Mulcahy, Destiny Pope, Loreen Pirnie, Mimi ･ｰ, and Nan Pelletier for hosting Facebook/Instagram fundraisers benefiting the INADcure Foundation in February. $2,291 was raised which helps bring us closer to our $7M goal for life-saving research. #togetherwewillbeatinad #birthdayfundraiser #inadcure
¿Podrías resistirte a esta sonrisa? Ayúdanos a convertir la lucha de Alejandro en una esperanza real. Necesitamos siete millones de euros para financiar los estudios preclínicos y ensayos que podrían salvar su vida y la de nuestros niños INAD. Si un millón de personas donara 7 euros, podríamos convertir nuestra esperanza en realidad y hacer de la vida de Alejandro un camino mejor. Envía un Bizum de 7 euros con el código 04479 (donación). #ñiños #esperanza #distrofia #donativos #inadcure #donativosparaniños #enfermedades #INAD #inad #recaudacion #ayuda #enfermedadesinfantiles
Dear Friends and Supporters, Seven years ago, when we established this organization, it was with the hope that families like ours, coping with the day-to-day realities of living with INAD/PLAN, would come together to take on this little-known disease. Our goal was to put INAD on the map, to give our daughter Ariya and the estimated 4200 children worldwide like her a voice, and to ensure that no stone was left unturned in the search for a cure. We believed that our collective grief could be transformed into collective strength and action – and we were right. Along this journey, we’ve come to appreciate the remarkable power of showing up. Despite unimaginable circumstances, families have shown up with unwavering strength for their children, one another, and the entire INAD community. These families, along with a dedicated collective of researchers and supporters, have shown up, not just in presence but in progress. The milestones we’ve reached these past 7 years are true collaborative achievements, demonstrating what can happen when a community works together and persistently shows up. So, while I may have laid the first stone, the steadfast commitment and support of INAD/PLAN families worldwide and all of you, our generous donors and supporters, have built the solid foundation we stand on today. Our call to action echoes loudly as we face the year ahead: let’s keep showing up. As we carry the memories of the beloved children who have bravely faced INAD/PLAN and now watch over us, their legacy fuels our urgency. Together, we will continue to honor all our children, those with us today and those forever in our hearts, as we push forward to a future without INAD/PLAN. To the families courageously sharing their stories, to the researchers on the brink of discoveries, and to all of the donors who fuel our mission - our heartfelt thanks for showing up! Leena Panwala President, INADcure Foundation #INADcureTurns7 #TogetherWeWillBeatINAD #INADcure #Advocate #SpreadAwareness #Raredisease
With our 7th birthday just 1 day away, we’re proud to share the last installment of our milestones series. Each milestone we achieve speaks volumes about the support of our resilient community as we continue to fight for the milestones our children lose, and the birthdays they never see 💪🏼. One initiative with a significant impact on our community has been our partnership with the Broad Institute of MIT and Harvard and Genomenon Inc., completing the first prevalence study for INAD/PLAN, which is now under review for publication. The study found that INAD may affect approximately 4,200 children worldwide 🌎. Less prevalent but no less desperate for a cure are juvenile NAD and PLAN-DP, with 832 and 166 identified cases, respectively. These insights reinforce the urgency of our mission and the need to fund the first-ever gene therapy trial for INAD. Every child counts, every research step matters, together, we will make a difference that echoes through generations. With hope and our collective efforts, we strive not only to achieve but to surpass every goal we set. Please donate today to help us make real progress for the estimated 5,195 people worldwide battling PLAN. Every donation brings us closer to a miracle 💫. #INADcureTurns7 #TogetherWeWillBeatINAD #INADcure #Advocate #SpreadAwareness #Raredisease
Esta primavera, haz algo por ellos. Únete a nuestra campaña SÚMATESUMA7, y realiza un donativo de 7 euros (vía bizum) con el código 04479 que podría cambiar el futuro de nuestros niños INAD. #inadcure #inadcurespain #donacion #niños #AyudaInfantil #donativos #ayuda #enfermedadesinfantiles #enfermedades #distrofia #donativosparaniños #esperanza #recaudacion #LuchaContraINAD
7 years of unity = 7 years of progress in the battle against INAD. 🎗️ With deep appreciation, we acknowledge the INAD/PLAN community. Your unrelenting determination over the past seven years to find a treatment for this devastating disease is truly inspiring. Whether it has been through raising awareness 📢, fundraising for critical research 💰, engaging in studies to share the unique experience of living with INAD/PLAN ✍🏽, or providing support within our community 🫂, the progress we have achieved is a true testament to our collective strength and power 💪. Click the graphic and swipe right to see even more incredible achievements we’ve made TOGETHER over the past seven years. #INADcureTurns7 #TogetherWeWillBeatINAD #INADcure #Advocate #SpreadAwareness #Raredisease Our amazing partners: @nyscf @bcmhouston @ohsunews @washu Our incredible fundraising teams: @inadcure_teamspain @jacksonsfriends @bisousforleo @ariyaswish @sage.a.day @give5challenge @agracefilledjourney @give5challenge @jadekennedifoundation And all our fundraisers at www.workingonamiracle.org
✨7 Years of Impact✨ Every project we fund, and every study we support directly contributes to bringing us closer to a cure 🧬. Our partnerships draw on the knowledge of academia, the innovation of the pharma/biotech industry, and the essential perspectives of the patient community. Let’s take a look at some of the milestones we’ve achieved over the past 7 years. #INADcureTurns7 #TogetherWeWillBeatINAD #INADcure #Advocate #SpreadAwareness #Raredisease
Prosím o viac takých chvíľ 💚 🤗😀. Jožko a Jerguško ❤️🫶 #inadobdarenichlapci #inadcure
Ayer día 21 de abril Adrián cumplió 6 años de vida; si hemos llegado hasta aquí, podemos llegar mucho más lejos. Feliz cumpleaños, pequeño héroe 🎂 #inadcure #sumatesuma7 #ayudainfantil #distrofianeuroaxonal #inadcurespain #enfermedadesinfantiles #donativo #Bizum04479
The INADcure Foundation is #workingonamiracle by raising funds for a clinical gene therapy trial for PLAN. Please support us by purchasing our merchandise and sharing the link with your family and friends. https://humanitysource.org/product-category/team-pages/inadcure/miracle/ #TogetherWeWillBeatINAD #inadcure
🎉 Countdown Continues: 8 Days to Our 7th Birthday! 🎈 In just 8 days, on April 27th, the INADcure Foundation celebrates a significant yet bittersweet milestone: our 7th birthday. 🎂 Seven years of tireless work, hope, and community. Yet, as we celebrate, our hearts are heavy knowing that the children we fight for are robbed of precious birthdays due to INAD/PLAN. This year, we have two birthday wishes! 🎁 $77,000 Fundraising Goal Help us make meaningful strides so that children suffering from INAD can celebrate more birthdays. Every dollar brings us closer to more birthdays and scientific breakthroughs 🧬. Donate, fundraise, or shop at our Working On A Miracle store to contribute, see link in bio. 🎁 Expand Our Community to 7k Followers Help us amplify our message! Follow us on Facebook 💙, Instagram 📸, and LinkedIn 🔗. Invite friends to like our page and join our cause. Use the hashtag #INADcureTurns7 and share your stories and support for the INADcure Foundation. Together, we can make a difference. Celebrate 7 years of impact with us and help build a future where every child with INAD has the chance to blow out another birthday candle. 🎂 #INADcureTurns7 #TogetherWeWillBeatINAD #INADcure #Advocate #SpreadAwareness #Raredisease
The INADcure Foundation is #workingonamiracle by raising funds for a clinical gene therapy trial for PLAN. Please support us by purchasing our merchandise and sharing the link with your family and friends. https://humanitysource.org/product-category/team-pages/inadcure/miracle/ #TogetherWeWillBeatINAD #INADcure
Todos nós carregamos conosco um legado, que hereditária, quer não. Alguém confio a nós a tarefa de dar continuidade a uma missão aqui na terra. Quem tem filhos compreende bem essa sensação, pois deseja dar a eles um destino melhor do que recebeu, para que possam passar adiante um legado ainda maior. Deixar um legado alinhado com a vontade do Senhor é como edificar uma alta torre, onde o teto de uma geração anterior é o estrado do posterior. Mas, para que essa torre possa ser alta é preciso que seu fundamento seja firme e sólido na palavra e em uma vida centrada na vontade de Deus. Aind que você não tenha recebido um bom legado,é possível deixar um. Um fundamento forte e sustentará a próxima geração .Portanto, mãos a obra. É tempo de construir. #minhainspiração #meufilhominhabida #inadcure #distrofianeuroaxonalinfantilinad #anad
E o feriado da Páscoa de 2024 foi maravilhoso 😍 #inad #inadcure #distrofianeuroaxonal #distrofianeuroaxonalinfatil
Maternidade atípica é uma vida solitária, e uma guerra para conseguir dar uma qualidade de vida para seu filho, porque pra eles tudo vale o valor de um "CARRO", Sem contar que ver a vida de seu velho ir se perdendo e você não conseguir fazer nada é ainda mais desesperador. #distrofianeuroaxonalinfantilinad #sindromedeseitelberger #inad #anad #inadcure #doencasraras
El sábado tuvimos un día de primavera espectacular, ideal para conocer nuestro pueblo y disfrutar de nuestro Museo Casa Dirección y otros espacios como nuestro centro o la zona de los antiguos talleres del Ferrocarril de Buitrón a San Juan del Puerto, donde además de celebrarse la Feria de la Tapa, también había un pequeño mercadillo de artesanía, plantas y libros.(a beneficio de Inadcure) Encantados se quedaron este grupo que venía desde Málaga, y que, alojados en nuestras playas, recorren la geografía onubense, conociendo entre otros, Valverde del Camino. #TurismoValverdedelCamino #MuseoCasaDirección #MarVazquez #ValverdedelCamino #visitaguiada #GRATUITA @aytovalverdedelcamino #saludlocal #patrimonio #artesanía #ValverdeMarket #inadcure #ferrocarrilbuitronsanjuandelpuerto
Do you believe in the possibility of Miracles? I sure do! I firmly believe in the transformative power of miracles, especially with the right support. Making it to my 50s sometimes feels like a miracle, but I want to share another miracle that I’m working on. The INADcure Foundation is actively working on a Miracle of its own, and I invite you to join me in making it a reality! I’m supporting INADcure’s gene therapy research program, which aims to launch the first gene therapy clinical trial for PLA2G6-Associated Neurodegeneration (PLAN) in 2025. However, I can’t do this alone – I need your support. Please use this frame to help me raise awareness and bring the INAD/PLAN community one step closer to our goal! We’re raising funds and awareness at www.workingonamiracle.org #inadcure #workingonamiracle #beatINAD Thank you! Get yourself this Twibbonize frame at twb.nz/planmiracle If you’d like to donate towards making this Miracle a reality, please visit my fundraiser at: https://give.inadcure.org/team/429574
Este precioso guerrero os desea un feliz fin de semana💜 No olvidéis difundir, compartir y, por qué no, hacer vuestra pequeña donación de 7 euros. Código Bizum 04479 Un pequeño gesto como este es capaz de conseguir grandes logros. Nosotros NO nos rendimos. #inad #inadcure #enfermedadesinfantiles #distrofianeuroaxonal #donacionbizum #comparte #difunde
Po hodine rehabilitácie zaslúžený relax v #parkżywiecki. Jožko sa veľmi tešil zvieratkám v mini ZOO, dokonca s nimi aj “hodil reč”.🤣 🦆🐑🐐🐓🐴🦚🐿️🌳 vzácny to čas 🫶. #inad #inadcure #inadobdarenychlapec
👨⚕️ Conheça o nosso time: PARTE 1 1 - Danilo de Assis Pereira - 👶 Neurologista Infantil e Professor no Departamento de Reprodução Humana e Infância da Pontifícia Universidade Católica de São Paulo. 2 - Luis Armando Souza Vieira - 📚 Estudante de Medicina na Pontifícia Universidade Católica de São Paulo. 3 - Maria Eduarda Munhoz Simeão Baganha - 📚 Estudante de Medicina na Pontifícia Universidade Católica de São Paulo. 4 - Laura Fantazzini Grandisoli - 🍏 Nutricionista e Mestre em Ciências pela Universidade de São Paulo. 5 - Natalia Spuzzilo - 🥦 Estudante de Nutrição na UNIP. 6 - Verônica Sakalauskas - 🥦 Estudante de Nutrição na UNIPJuntos, estamos comprometidos em fornecer cuidados de saúde de qualidade e contribuir para o avanço da medicina. 💪 #equipepesquisa #saúde #Medicina #pucsp #inad #inadcure
Murilo tem Distrofia Neuroaxonal Infantil INAD/ANAD, ou Síndrome de Seitelberger uma doença rara e ainda sem cura, oramos todos os dia para a Terapia Gênica chegar logo, porquê dói muito ver meu filho se perdendo dia após dia, na doença INAD/ANAD o Tempo é o que eles não tem, o tempo é seu inimigo. Fé e esperança é o que me guia. #inadcure #inad #anad #distrofianeuroaxonalinfantil #sindromedeseitelberger #doencasraras #pcd #RareDisease
🔵 Hoje, 29 de fevereiro, é o Dia das Doenças Raras! Você sabia que a INAD (Distrofia Neuroaxonal Infantil) é considerada uma doença ultrarrara? É importante aumentar a conscientização sobre essas condições e apoiar aqueles que vivem com elas. Juntos, podemos fazer a diferença! 💙 #DiaDasDoençasRaras #inad #Conscientização #saúde #inadcure
Today is Rare disease day! Here are some Rare Disease Day flashback pictures. 💚💜💗💙 Our goal is to continue to help raise awareness for (INAD) Infantile neuroaxonal dystrophy and the aNAD Atypical Neuroaxonal Dystrophy which is a slower progression of INAD. INAD/ANAD is an extremely rare disease. It may affect 1 child out of every 1 million to 2 million children. Infantile: INAD is present at birth (a congenital disease). Symptoms typically appear during infancy and before a child is 3 years old. Atypical: Between the ages of 3 and 4. Neuroaxonal: The disease affects axons in nerve cells. Axons carry messages from your brain to the rest of your body. Dystrophy: Dystrophy is the medical term for disorders that cause tissues, organs and muscles to waste away. What is INAD? Infantile neuroaxonal dystrophy (INAD) is a rare, inherited disorder of the body’s nervous system. It affects axons, the part of a neuron (nerve cell) that carries messages from the brain to other parts of the body. INAD causes loss of vision, muscular control, and mental skills. Atypical (INAD) is a slower progression of INAD called (ANAD). Both of my girls have (ANAD). As always my goal for sharing this is to help spread awareness in hopes of one day finding a cure. So share this video. Thank you so much for all of your support. 💚💜🙏🏾 If you would like to donate to the mission and help us find a cure and fund gene therapy Fundraising links in the bio. Thank you so much for all of your prayers and support on this journey. 💚🙏🏾💜 #beatINAD #aNAD #INAD #ThisisINAD #ThisisaNAD #togetherwewillbeatINAD #RareDiseaseDay #rarediseaseday2024 #Atypical_INAD #inadcure
Hi, I’m Ingrid, do you believe in the possibility of Miracles? I sure do! I firmly believe in the transformative power of miracles, especially with the right support. The INADcure Foundation is actively working on a Miracle of its own, and I invite you to join me in making it a reality! I'm supporting INADcure's gene therapy research program, which aims to launch the first gene therapy clinical trial for PLA2G6-Associated Neurodegeneration (PLAN) in 2025. However, I can't do this alone – I need your support. Please use this frame to help me raise awareness and bring the INAD/PLAN community one step closer to our goal! We're raising funds and awareness at www.workingonamiracle.org #inadcure #workingonamiracle #beatINAD Thank you! Obtenez ce cadre Twibbonize chez twb.nz/planmiracle #twibbonize
The power of miracles… I firmly believe in the transformative power of miracles, especially with the right support. The INADCure Foundation is actively working on a Miracle of its own, and I invite you to join me in making it a reality! I'm supporting INADcure's gene therapy research program, which aims to launch the first gene therapy clinical trial for PLA2G6-Associated Neurodegeneration (PLAN) in 2025. However, I can't do this alone – I need your support. Please use this frame to help me raise awareness and bring the INAD/PLAN community one step closer to our goal! We're raising funds and awareness at www.workingonamiracle.org #inadcure #workingonamiracle #beatINAD Thank you! Get yourself this Twibbonize frame at twb.nz/planmiracle #twibbonize
On this #RareDiseaseDay and every day, let’s honor the remarkable strength and resilience exhibited by individuals and families facing rare conditions. Join us in making a meaningful impact by raising awareness and advocating for research to support the development of treatments for rare diseases and fund more cures. #inadcure #workingonamiracle #beatINAD
Do you believe in the possibility of Miracles? I sure do! I firmly believe in the transformative power of miracles, especially with the right support. The INADcure Foundation is actively working on a Miracle of its own, and I invite you to join me in making it a reality! I’m supporting INADcure’s gene therapy research program, which aims to launch the first gene therapy clinical trial for PLA2G6-Associated Neurodegeneration (PLAN) in 2025. However, I can’t do this alone – I need your support. Please use this frame to help me raise awareness and bring the INAD/PLAN community one step closer to our goal! We’re raising funds and awareness at www.workingonamiracle.org Thank you! Get yourself this Twibbonize frame at twb.nz/planmiracle #inadcure #workingonamiracle #beatinad INADcure Foundation: Fighting to beat Infantile Neuroaxonal Dystrophy
Wishing you everything that makes you happiest, today and always. Happy Valentine's Day! #inadcure #beatinad #valentinesday
A BIG Thank you to River Curtis, Shannon Mary, Mimi 馃グ, and Loreen Pirnie for hosting Facebook/Instagram fundraisers benefiting the INADcure Foundation in January. $1,222 was raised, which helps bring us closer to our $7M goal for life-saving research. #fundraiserfriday #rarediseaseawareness #inadcure
Čo je šťastie ???? Úsmev mojich bojovníkov- Jožka a Jerguška 🫶, nič viac ❤️ #inadobdarenichlapci #inadcure #INAD #myhappiness
A pesar de su lucha diaria, Adrián no pierde su sonrisa. En nuestro país, solamente cinco niños padecen distrofia neuroaxonal infantil. “El verdadero amor es desinteresado y está exento de todo miedo. Se derrama sobre el objeto de su afecto sin que pida nada a cambio. Su alegría está en la alegría de dar.” (Florence Scovel Shinn, artista e ilustradora de libros estadounidense). Por favor , únete a nuestra campaña 𝐒𝐔́𝐌𝐀𝐓𝐄, 𝐒𝐔𝐌𝐀 7, y ayuda a dar esperanza en sus vidas. Una donación de 7 € (bizum) es todo cuanto necesitamos ¡Tu apoyo puede cambiar su futuro! #INADcure #Adrián #SumandoEsperanzas #AyudaInfantil #inadcurespain #niños #genetherapy #súmatesuma7 #TogetherWeWillBeatINAD #esperanza #lucha #solidaridad #sumatesuma7 #INAD #Bizum04479 #inadcurespain #LuchaContraINAD #INAD
Niekedy sa treba otočiť k životu aj takto 😜…..Jerguško v akcii😍, má super ortézky vyrobené na mieru v Krakove. #inadobdarenychlapec #beatinad #inad #inadcure
Happy Big 11 Birthday to Jackson!! Jackson has been feeling a bit under the weather since last week. Yesterday was his actual birthday but he was not feeling it. Since the weather is so cold we will be waiting until it warms up to do something special! We are so grateful and fortunate to have another year with Jackson even though this last year has been the hardest. We love you Jackson! 🎂🎉🎈
La sonrisa de un niño es el reflejo más puro de la alegría, una chispa luminosa que ilumina el corazón. Como dijo Thich Nhat Hanh: 'A veces, la alegría más simple es un recordatorio de lo hermosa que puede ser la vida'. Únete a nuestra campaña 𝐒𝐔́𝐌𝐀𝐓𝐄, 𝐒𝐔𝐌𝐀 7, y ayuda a dar esperanza en sus vidas con una donación de 7 €. ¡Tu apoyo puede cambiar su futuro! 🌟💙💜 ➡️ Bizum al 04479 💰 Transferencia al IBAN ES98 0049 4289 4929 1400 8926 #INADcure #Alejandro #SumandoEsperanzas #AyudaInfantil #inadcurespain #niños #genetherapy #súmatesuma7 #TogetherWeWillBeatINAD #esperanza #lucha #solidaridad #sumatesuma7 #INAD #Bizum04479 #inadcurespain #LuchaContraINAD #INAD
«El futuro pertenece a quienes creen en la belleza de sus sueños.» -Eleanor Roosevelt Aspiramos a construir un futuro donde los sueños de niños como Adrián se vuelvan realidad. Únete a nuestra campaña 𝐒𝐔́𝐌𝐀𝐓𝐄, 𝐒𝐔𝐌𝐀 7, y ayuda a dar esperanza en sus vidas con una donación de 7 €. ¡Tu apoyo puede cambiar su futuro! 🌟💙 ➕ SÚMATE, SUMA 7 ➡️ Bizum al 04479 💰 Transferencia al IBAN ES98 0049 4289 4929 1400 8926 #INADcure #navidad #Adrian #inadcurespain #niños #genetherapy #súmatesuma7 #TogetherWeWillBeatINAD #esperanza #lucha #solidaridad #sumatesuma7 #INAD #Bizum04479 #inadcurespain #LuchaContraINAD #INAD
Another year, another birthday!!! In 2024, we would love it if you hosted a birthday fundraiser on Instagram or Facebook for the INADcure Foundation. It is as easy as 123! #inadcure #birthdayfundraiser #fundraiserfriday #togetherwewillbeatinad
«La vida es un regalo, aprecia cada momento y encontrarás razones para sonreír.» - Catherine Pulsifer Tu apoyo puede ser una de esas razones. Únete a nosotros sumando esperanzas para combatir esta enfermedad y ayudar a Alejandro a encontrar sonrisas y momentos de alegría en su lucha diaria. Juntos, podemos hacer una diferencia significativa en sus vidas. ➡️ Bizum al 04479 💰 Transferencia al IBAN ES98 0049 4289 4929 1400 8926 #INADcure #Alejandro #SumandoEsperanzas #AyudaInfantil #inadcurespain #niños #genetherapy #súmatesuma7 #TogetherWeWillBeatINAD #esperanza #lucha #solidaridad #sumatesuma7 #INAD #Bizum04479 #inadcurespain #LuchaContraINAD #INAD
El mejor regalo de Navidad es estar a tu lado.🎄Tú puedes cambiar su futuro.❤️Únete a nosotros y hagamos posible un mañana lleno de esperanza y alegría para Adrián y nuestros niños INAD. 🌟 ➕ SÚMATE, SUMA 7 ➡️ Bizum al 04479 💰 Transferencia al IBAN ES98 0049 4289 4929 1400 8926 #INADcure #navidad #Adrian #inadcurespain #niños #genetherapy #súmatesuma7 #TogetherWeWillBeatINAD #esperanza #lucha #solidaridad #sumatesuma7 #INAD #Bizum04479 #inadcurespain #LuchaContraINAD #INAD
Merry Christmas from Jackson! We hope your day is filled with joy and love ♥️🎄
En estas fiestas, extendemos nuestro amor y esperanza a Alejandro y a todos los niños afectados por la Distrofia Neuroaxonal Infantil (INAD). Juntos, apoyamos la investigación para encontrar una cura. 🌟🎁🎄 ➕ SÚMATE, SUMA 7 ➡️ Bizum al 04479 💰 Transferencia al IBAN ES98 0049 4289 4929 1400 8926 #INADcure #navidad #Alejandro #inadcurespain #niños #genetherapy #súmatesuma7 #TogetherWeWillBeatINAD #esperanza #lucha #solidaridad #sumatesuma7 #INAD #Bizum04479 #inadcurespain #LuchaContraINAD #INAD
Shop our GIVE HOPE store - our merchandise brings awareness and helps us raise funds for our clinical gene therapy trial. Go to https://humanitysource.org/product-category/team-pages/inadcure/give-hope/ #holidayshoppingmadeeasy #inadcure #genetherapy #raredisease
Wishing all those who celebrate a Happy Posada! Las Posadas is celebrated in cities and towns across Mexico and some parts of the United States between December 16th and 24th. Each evening during the festival, a small child dressed as an angel leads a procession through the town's streets. Las Posadas commemorates Joseph and Mary's journey from Nazareth to Bethlehem in search of a safe refuge where Mary could give birth to the baby Jesus. A mass follows the procession and at the end of the service, children break open piñatas filled with candy, toys, and, occasionally, money. The piñatas are usually crafted as a star, which is said to have guided the three wise men to the newborn Jesus. #INADcure #HappyPosadas #pinatas #lasposadas #threewisemen
🫶….slová nie sú potrebné ❤️ Hanka a Jožko💕 #inadobdarenychlapec #inadcure #love #láska
Su risa ilumina nuestros días y su coraje nos inspira a seguir adelante. ¡Nos recuerda que cada momento de alegría es una victoria! 💛 Juntos, estamos comprometidos a luchar contra INAD en su búsqueda de una cura. ➕ SÚMATE, SUMA 7 ➡️ Bizum al 04479 💰 Transferencia al IBAN ES98 0049 4289 4929 1400 8926 #Inadcure #Adrian #sonrisa #inadcurespain #niños #genetherapy #súmatesuma7 #TogetherWeWillBeatINAD #esperanza #lucha #solidaridad #sumatesuma7 #INAD #Bizum04479 #inadcurespain #LuchaContraINAD #INAD
A BIG Thank You to Jamie Smith and Nannette Pelletier for hosting Facebook/Instagram fundraisers benefiting the INADcure Foundation in November. $383 was raised, which helps bring us closer to our $7M goal for life-saving research. #fundraiserfriday #rarediseaseawareness #inadcure
EXPOSICIÓN DE COCHES CLÁSICOS A BENEFICIO DE INADCURE 🗓️ En FEMU, 16 y 17 Diciembre ➡️ El Club Clásicos de Sevilla "CLASE" trae a Valverde del Camino varias colecciones de vehículos clásicos provenientes de diferentes lugares, entre las cuales destaca la colección Pérez Cobreros- Gata Cuadrado que será la más numerosa en la Exposición benéfica que tendrá lugar los días 16 y 17 de diciembre en Valverde del Camino. 💚 Los beneficios de la misma se destinarán a la Asociación INADCURE, dedicada a una enfermedad minoritaria que padece Alejandro, vecino de esta localidad. ⚠️ Se expondrán en el recinto FEMU un Seat 850 Spyder de 1961; un Seat 600 Abarth de 1972;un Pininfarina Spider Azurra de 1966,; un Mitsubishi prototipo preserie único de 1999; un Morris Minor precursor del Mini de 1952, la pieza más antigua de la exposición; un Cadillac DTS del 2004, vehículo presidencial de EE UU conocido como "La Bestia" y sólo 5 unidades en España; un Jaguar XJ de 1963 original inglés y batalla larga ( LWB) sólo 8 unidades en España; un Rolls Royce Corniche Convertible de 1977 recientemente salido a la luz por haber pertenecido al cantante Julio Iglesias, se expondrá por primera vez y de forma exclusiva para este evento; un Daimler 104 Regency Sportsman del cual se fabricaron 5 unidades y sólo queda la que se va a exponer, entre otras piezas exclusivas más. 👀 Un evento único y por una bonita causa 💚 #valverdedelcamino #Inadcure INADcure: Team Spain Club Clase.
We want to thank everyone who participated and donated during our #GivingTuesday Give Hope campaign. Your generosity helped us raise over $5,000, bringing us closer to our $7M goal. We are so grateful to be a part of a community of people who want to help us Give Hope to our INAD/ANAD families. #GivingTuesday #INADcure #GiveHope
The last few months have definitely been challenging for Jackson. We had multiple infections to get under control and what was bad they were all at the same time and required multiple rounds of antibiotics. He hasn’t been his smiling self and it’s taken until now to get him back to baseline. We are so happy to share that yesterday we finally were able to go out and do something fun. We went down to the local farmers market and got a Christmas tree. Jackson definitely enjoyed getting out and gave us some great smiles! He thought the gingerbread man song was hilarious as we saw a life size gingerbread man! 🎄
«La vida es la infancia de nuestra inmortalidad.» -Johann Wolfgang von Goethe En esa infancia, Alejandro lucha contra la enfermedad INAD. Ayúdanos a convertir esa lucha en una esperanza real. Necesitamos siete millones de euros para financiar estudios preclínicos y ensayos que podrían salvar su vida y la de nuestros niños INAD. Si tan solo un millón de personas donara 7€, podríamos convertir la esperanza en realidad. ¡Únete a nuestra causa para ofrecer un futuro a nuestros niños! ➕ SÚMATE, SUMA 7 ➡️ Bizum al 04479 💰 Transferencia al IBAN ES98 0049 4289 4929 1400 8926 #Inadcure #Alejandro #JohannWolfgang #inadcurespain #niños #genetherapy #súmatesuma7 #TogetherWeWillBeatINAD #esperanza #lucha #solidaridad #sumatesuma7 #INAD #Bizum04479 #inadcurespain #LuchaContraINAD #INAD
«La grandeza de la vida no consiste en nunca caer, sino en levantarse cada vez que nos caemos.» - Nelson Mandela Ayúdanos a cambiar su futuro y el de muchos otros niños. Cada día es una oportunidad para hacer una diferencia. Únete a nosotros en la lucha contra la enfermedad INAD y ayúdanos a mejorar vidas. 💪 ➕ Súmate, suma7. ➡️ Bizum al 04479 💰 Transferencia al IBAN ES98 0049 4289 4929 1400 8926 #inadcure #Adrian #vida #inadcurespain #súmatesuma7 #TogetherWeWillBeatINAD #esperanza #lucha #solidaridad #sumatesuma7 #INAD #Bizum04479 #inadcurespain #LuchaContraINAD #INAD #LuchaContraINAD
Jožko ❤️, tak statočný, trpezlivý, pokorný, láskavý …obdarený nielen INADom, ale aj úsmevom 🫶😊 #inadcure #inadobdarenychlapec #togetherwewillbeatinad
«Nacer es recibir un universo entero como regalo.» - Jostein Gaarder Únete a nuestra misión para preservar el regalo más preciado: la vida de Alejandro y de nuestros niños INAD. Necesitamos 7 millones de euros para estudios que podrían salvar sus vidas. ¡Tu donación de 7€ puede cambiar su futuro! Únete a nosotros en la esperanza y la curación.🤝💙 #inadcure #Alejandro #JosteinGaarder #inadcurespain #niños #genetherapy #súmatesuma7 #TogetherWeWillBeatINAD #esperanza #lucha #solidaridad #sumatesuma7 #INAD #Bizum04479 #inadcurespain #LuchaContraINAD #INAD
«Cada día es una oportunidad para aprender algo nuevo, para aventurarse, para prosperar y para valorar la vida en todas sus formas.» - Oprah Winfrey Tú puedes cambiar su vida. Únete a nosotros para transformar su futuro y el de muchos otros niños contra esta enfermedad INAD. ➕ Súmate, suma7. ➡️ Bizum al 04479 💰 Transferencia al IBAN ES98 0049 4289 4929 1400 8926 #inadcure #Adrian #vida #inadcurespain #súmatesuma7 #TogetherWeWillBeatINAD #esperanza #lucha #solidaridad #sumatesuma7 #INAD #Bizum04479 #inadcurespain #LuchaContraINAD #INAD
«La sonrisa en su cara es mi razón para seguir adelante.» - Charles Chaplin Ayúdanos a cambiar su futuro y el de muchos otros niños. ➕ Súmate, suma7. Juntos podemos hacer la diferencia. 💪 ➡️ Bizum al 04479 💰 Transferencia al IBAN ES98 0049 4289 4929 1400 8926 #inadcure #Alejandro #CharlesChaplin #inadcurespain #niños #genetherapy #súmatesuma7 #TogetherWeWillBeatINAD #esperanza #lucha #solidaridad #sumatesuma7 #INAD #Bizum04479 #inadcurespain #LuchaContraINAD #INAD
A BIG thank you to Anna Marie Jones, Zara Akhtar, Leena Panwala, Diane Arsenault, Danni Phelps, and Kristin Lynn for hosting Facebook/Instagram fundraisers benefiting the INADcure Foundation in September. Over $2,100 was raised, which helps bring us closer to our $7M goal for life-saving research. #beatINAD #raredisease #INADcure #FundraiserFriday
JOŽKO 💕 úsmev, tak potrebný 😀 #worldsmileday #inadobdarenychlapec #inadcure
O amor de pai é um amor que pode e tem que ser aperfeiçoado. É amor que nasce espontâneo, consistente e condensado, mas que espera, sempre, o conhecimento necessário para torná-lo perfeito. 💜 #beatinad #inadcure #anad #raredisease
O brincar é uma atividade que auxilia na formação, socialização, desenvolvendo habilidades psicomotoras, sociais, físicas, afetivas, cognitivas e emocionais. Ao brincar as crianças expõem seus sentimentos, aprendem, constroem, exploram, pensam, sentem, reinventam e se movimentam. #beatinad #anad #inadcure #distrofianeuroaxonalinfantil #doençasraras #raredisease
“Viver a maternidade real é me doar a todo momento. É pensar e estar com ele no meu pensamento 24 horas por dia. É me preocupar, é sentir esse medo, acho que até mesmo um medo de perder. É querer aproveitar cada momento como se fosse único e pedir que o tempo pare.” Cada dia me redescubro como mãe crescendo e amadurecendo, e entendendo o real motivo do meu propósito de vida, do amor, do que eu sinto pelo meu filho Murilo. Você vê repetições de como você é ou de como você não é nele.” #beatinad #anad #inadcure #distrofianeuroaxonalinfantil #doençasraras #raredisease
Como é lindo poder olhar nos seus olhos e te chamar de meu. Nunca senti um amor tão forte quanto esse que tenho pelo meu filho! Desde que nasceu você aquece meu coração com seu sorriso e meu peito se enche de orgulho por você. Te amo, meu filho! #beatinad #anad #inadcure #distrofianeuroaxonalinfantil #doençasraras #raredisease