Instagram story viewer> @curenf2> Tagged

Cure NF2 Foundation

@curenf2

1.4K

followers

592

following

Cure NF2 is a non-profit seeking a cure or treatment through gene or immunotherapy. Family and parent-guided and supported entirely by volunteers.

POSTS STORIES REELS TAGGED

And you surpass your fundraising goal for @curenf2!!

I can’t believe I’m running my first @rundisney race this Sunday, AND it’s my first HALF 😱

Thank you to everyone who cheered me on along the way and supporting my fundraising efforts through @storybookbuttons!

LETS DO THIS 🔥🔥🔥

#rundisney #wineanddinehalfmarathon #wineanddineweekend #rundisneyhalfmarathon #disneymom

72

24

Accessorized one of my favorite bags from @pinkjoyco with my new favorite button from @storybookbuttons
Each purchase from Storybook Buttons goes to @alexatthecastle ‘s @rundisney cause- @curenf2

Disneygram | disneyinsta | Disney content creator | Disney girl | WDW AP | Disney life | Disney local | Walt Disney world | disney parks | Disney mom | Disney fashion | Disney outfit | Disney style | Disney accessories

50

14

Bringing a little creativity and a lot of vintage charm to my fundraising efforts for @curenf2!

Please go check out @storybookbuttons and share this with a friend who would love a one-of-a-kind find!

First batch is up! Comment to claim and I’ll follow up 🫶

(Will post a how-to also soon!)

Can arrange park-pick up or shipping for $5 💌

Thank you 🙏

#vintagedisney #disneybuttons #vintagebuttons #curenf2 #rundisney

88

23

I work with kids. There’s been plenty of times I’ve had a child come up to me and say ‘smile’ and I couldn’t. Their next question would be ‘why can’t you smile like this’ as they lift up both sides of their face.
I respond with ‘that’s just who I am’.
They often ask what happened , I tell them in the most simple way possible and they love it. They love me for me - Ash. The girl that plays cards with them, who ties their shoe laces, who makes brekky, she makes loom bands and plays soccer.
Usually they become attached to my hip and scream ‘ash’ from across the court yard 😂.

Do you have or know someone with NF2/schwannomatosis? Join the community @nf2getsonmynerves, don’t hesitate to chuck me a DM 💚💙

#nf2 #facialpalsy #facialparalysis #schwannomatosis #chronicillness

16

1

Retour sur notre incroyable Event Gamer du week-end dernier 🩷

Pour la 8eme édition, nous avons battu le record de fonds récoltés, grâce aux gamers et aux followers présents sur cet évènement 🩷

Mais à quoi consiste t’il ?

Une cinquantaine de personnes ( les gamers ) jouent à différents jeux vidéos sur l’ordinateur, des visiteurs, des viewers viennent participer et fonds des dons au profit de l’Asso Princesse Paloma 🩷

Cet évent réuni des milliers de personnes qui viennent durant les 48h partager et faire voler la Colombe 🕊️. Généralement celle-ci vole en moyenne dans 80 pays à travers le globe 🌍

A quoi sert cet event ?

Comme chaque année, les fonds récoltés sont reversés à Cure NF2 Foundation UK & Europe afin de faire avancer la recherche contre la NF2, la maladie de notre Princesse 🩷

1 personne sur 25000 est touché par cette maladie qui pour rappel, inonde le système nerveux et les méninges de tumeurs.

Grâce à cet event nous participons concrètement à aider, soigner, soulager et pourquoi pas un jour guérir les enfants et adultes touchés par la NF2 🙏🙏

En tant que ambassadeur France 🇫🇷 de cette maladie, nous sommes heureux de récolter chaque année une belle somme 🩷

Merci aux gamers, bénévoles, donateurs, viewers pour votre générosité et votre soutien 🙏🙏 à l’année prochaine…..

9

1

🧡🤩 Memorable May…

Trying to reflect on everything that happened in May! When I first thought about setting myself a goal and hopefully raising some money for @curenf2 I had no expectation other than to make that 5K a day happen! It seemed a bit trivial as folk are out there smashing marathons and the like…of course I soon gave my head a wobble and reminded myself of the operation I’m still recovering from 🙃

As soon as word got out, friends and family lifted me up with their support and pledged to help me complete some of the days. I received messages and donations from people I haven’t spoken to in years! My kids constantly asked how I had got on at the end of each day and I hope I’ve made them proud!

I’ve found sharing my journey so far with NF2 really cathartic and if opening up about it helps 1 person through the difficulties, then it’s totally worth it.

I’ve felt so much love from everyone and it’s really lifted me and kept me going 🧡

Special shoutout to @liammarkbray for never letting me doubt myself and for the excellent camera skills on the Phoebe Buffay run through Central Park 😏

An unbelievable £2210 raised for @nf2biosolutionsuk 🤩🤩🤩 Thank you everyone! 🤩🤩🤩

@curenf2 #nf2 #nf2awareness #nf2journey #braintumour

15

2

✌️⌛💜 Schwannomatosis asociada a NF 2

🔬🧬 Antes se llamaba Neurofibronatosis tipo 2, hoy sigue teniendo un nombre difícil de pronunciar, y sigue siendo más dificil vivir con ella cada dia 💪

#MAYO mes de Conocimiento y crear conciencia de la NF 💚💜
💚 Neurofibromatosis tipo 1 (NF1)
Y
Schwannomatosis asociada a NF 2

⏰Hace años que ambas enfermedades se relacionan y se tratan juntas por su efecto en el sistema nervioso.

DIFUNDE Y ACOMPÁÑANOS 💪👏👏
¡¡JUNTOS PODEMOS MÁS !!

#ultimominuto
#endnf2
#schwannomatosisawarenessDay
#fundacioneschile

33

0

I couldn’t be more excited to share that I’ve been chosen as a vendor for The Country Living Fair October 2-4 in New York’s beautiful Hudson Valley. Join me and more than 200+ talented makers and dealers to shop and/or just be inspired. You can find all the latest details on the event, including soon-to-come speaker and workshop announcements, at the link in my bio or countrylivingfair.com. ❤️

As a reminder, my profits go to Cure NF2 Foundation (www.curenf2.org) ❤️

#vintagelove #countrylivingmag #vintagefurniture #newyorkantiques #countrylivingmagazine

15

6

💙 Neurofibromatosis Type 2 - related schwannomatosis (NF2-swn) is a rare genetic condition that affects approximately 1 in 50,000 people worldwide!

💚 It is caused by a mutation on Chromosome 22q12.2 in the NF2 gene which codes for a tumor suppressor named Merlin (aka Schwannomin)… when this tumor suppressor doesn’t work, tumors can grow on nerves throughout the body

💙 Because NF2-SWN is not widely known, early symptoms are often missed or misdiagnosed… which leaves many of us without answers for years

🫶🏽 Want to help drive research? Please share or donate to my @childrenstumor campaign! Or to @curenf2 @nf2biosolutionsuk

Sources:
https://medlineplus.gov/genetics/condition/neurofibromatosis-type-2/

https://www.hopkinsmedicine.org/health/conditions-and-diseases/neurofibromatosis/neurofibromatosis-type-2

#nf2aware #nf2 #neurofibromatosis #nf2warrior #raredisease

13

6

💚May is NF Awareness Month 🩵

Neurofibromatosis (NF) is a group of genetic conditions that cause tumours to grow on the nerves.
There are three types: NF1, NF2-related Schwannomatosis, and Schwannomatosis.

Each type is linked to changes in specific genes:

🧬NF1 is caused by a change in the NF1 gene on chromosome 17.
🧬NF2-related Schwannomatosis is caused by a change in the NF2 gene on chromosome 22
🧬Schwannomatosis is linked to changes in the SMARCB1 or LZTR1 genes also on chromosome 22.

Although they share similarities, each condition affects people differently and can cause a wide range of symptoms.

Awareness matters. Research matters. Support matters.🤍

Different conditions. Shared strength. Stronger together 💚

#NFAwarenessMonth #Neurofibromatosis #NF1 #NF2RelatedSchwannomatosis #Schwannomatosis

111

3

To start this page I thought I would take the time to give a quick” summary of my story with NF2.
Hi! I’m Ashlynn. I’m based in NSW Australia and I have Neurofibromatosis type 2.
When I was 9 I started getting sick. I would often run into things and mum would laugh and say ‘the wall hasn’t moved’ (it feels like everything is constantly moving). I kept rapidly losing weight and was getting sicker by the day, my mobility was declining and the fatigue was unbearable. The day before my 11th birthday I broke my arm and developed ‘left side neglect’. I was soon sent to the Children’s hospital at Westmead for what was supposed to be a once off MRI, and I ended up staying for 2 months. An 8 hour brain surgery later and long rehab, I recovered and was diagnosed with NF2 shortly after I developed bilateral vestibular Schwannomas. One brain surgery is traumatising enough, but 2 more potential uninvited friends living in my head? No thanks. They don’t pay me enough.
They didn’t know how I would recover since the tumour resection was such a rare and risky case. 2 years later I was gifted a horse from the Make A Wish Foundation. Things were looking up aside from constant appointments, fatigue, regular MRIs, and treatments. I was on Avastin for 6 years through a chemo port placed in my chest, until it damaged my kidneys. I was quickly pulled off that and for a year I was doing well again, until I had a sneaky facial tumour develop on my facial nerve leaving me with facial paralysis (now progressed to palsy) at 19 years old. So that was a big adjustment, my confidence got rocked, I had to stop working because my body was unreliable. I’m now on brigatinib 180mg a night, and it seems to be going well… aside from the side effects which I’ll do a seperate post on. I’ll also talk more on my secondary conditions caused by surgeries, tumours, and treatments, but I thought I better introduce my NF2 self first. Coming up next, the horses, guide dog training, appointments, and more!
#nf2 #neurofibromatosistype2 #schwannomatosis #braintumours #rarediseaseday

18

2

Estou muito feliz, Pessoal. Porque preciso muito.
Malu é bem disposta, demonstrou-se com muito conhecimento . Ela chegou na quarta-feira e na sexta já rendemos muito.

A terapia ocupacional é fundamental para preservar muitas habilidades fundamentais para as nossas vidas.

Temos muito que trabalhar, pois nos últimos dois meses tive uma perda de força e controle do lado esquerdo. A equipe da neuro já está acompanhando. Observando. Meus exames de ressonância deram com alterações. Houve crescimento nos tumores. Sim, ainda tenho dois grandes no encéfalo.

É de batalhas que se faz a vida.

Convido você a comentar e a compartilhar, repostar com fidelidade para que este defeito no cromossomo 22 gerador desta síndrome, seja objeto de pesquisas.

Mesmo que a cura via ciência ( porque o Senhor pode mudar todas as coisas) não chegue para mim, as futuras gerações serão beneficiadas.

Obrigado!

#isaacmeinspira
#nf2
#saude
#coragem
#neurologia
#pesquisaeextensão
#bio

16

6