February 2nd, 6-10pm. Fundraiser event at Tilted Axes in West Chester, Pennsylvania. Axe Throwing event includes food, wine, and beer and a silent auction.
Click here to buy tickets.
4 days ago
My name is Fabian, I am 33 years old and I live in Augsburg, Germany.
This is my NF2 story:
My parents used to visit the ophthalmologist regularly with me when I was a baby and when I was a child and it was found then that my left eye did not respond to the standard tests in the usual way.
After many tests, it was was determined that I am blind in my left eye and my dear ophthalmologist - who still treats me today - initially tried to get my eye working with an eye patch, among other techniques. The scar on the retina made it impossible to see.
My childhood after that point was generally carefree, and I am grateful for this. However, when I was 11 I was speaking to my grandfather on the phone and I could not understand him when I used my left ear. A bad feeling then spread through my body as I could not understand what was going on. The hearing test in the ENT confirmed hearing loss on the left side. This was followed by an MRI, which led to the final diagnosis of NF2!
We opted for early vestibular schwannoma (VS) surgery to have a greater chance of preserving my residual hearing in my left ear. The plan worked and I was able to preserve my hearing until today despite continued VS growth.
Aside from this, all was well until a shock diagnosis on my 18th birthday when doctors found a 13.5 cm tumor under my left kidney - and my doctors told me that they thought it was malignant.
The kidney was jammed and relieved by a ureteral track. After the ureteral splint operation, I was allowed to celebrate my 18th birthday, but I then had to endure the serious operation a week later. Fortunately, the tumor the doctors found was not malignant and could be removed completely. Since then, I developed a cataract on my blind eye and many smaller tumors are growing on the ocular nerves of both my eyes. Thankfully, these tumors remain constant in size.
Additionally, at the age of 22 I developed a pronounced dorsiflexion on the left side due to many tumors in the lumbar spine and then said goodbye to the hearing in my right ear when I was 24, relying on a hearing aid to help my left ear.
At this point, I felt that I could not continue my office job and became unemployed. This was followed by a major depressive phase, accompanied by the struggle to master life with the new condition.
Despite this, I managed to fight back and complete my vocational rehabilitation, where I learned a new skill and developed a new profession as a software developer.
However, NF2 was not finished with me as a schwannoma was found on the venous plexus in my right forearm and it disrupted my work enough for me to decide to have an operation to remove it as the tumor was causing me great pain in my right arm. I was fortunate once more as the surgery was without complications and the surgeons could remove the entire tumor.
That said, I could not rest as the next surgery was already in sight as the VS tumors were growing to a dangerous size. However, this time I decided to try a drug called Avastin instead of undergoing more surgery - and the plan worked!
The tumors in my body have been stable for the last one-and-a-half years thanks to Avastin, and I am thankful for this as my residual hearing in my left ear has been preserved.
Avastin is not without its side effects though, as the drug has made me very sensitive to light, which causes me additional problems in everyday life, but I will survive that, too.
As for my hearing, I will be getting a cochlear implant in a few weeks and I am hoping to be able to hear words again. ...
6 days ago
My name is Billie from Australia and I was diagnosed with NF2 in 2014 at the age of 27. I started experiencing symptoms including hearing loss, pins and needles in my face and vertigo nine years prior to this, and was misdiagnosed with ear infections for the entirety of those nine years.
By chance, moving house and consulting with a new General Practitioner led to referral to an ENT, who organised an MRI of my brain, not expecting to find anything.
Two weeks later, I was sitting in his office as he told me that I needed to consult with a neurosurgeon ASAP as he was “not qualified to deal with this”.
One week later, I was consulting with one of my city’s top skull base neurosurgeons, who diagnosed me with NF2. My imaging showed bilateral vestibular schwannomas, bilateral trigeminal schwannomas, a third nerve schwannoma, a ninth nerve schwannoma, and 12 meningiomas.
I was scheduled for emergency surgery as one of my vestibular schwannomas measured approximately 3cm in diameter, and was underneath my largest tumour, a right-sided trigeminal schwannoma which measured 3cm x 4cm x 6cm. These two large tumours were compressing my brainstem significantly and causing symptoms including cardiac arrhythmia.
Since this surgery in 2014, I have also had a large peripheral tumour removed from my chest, and two large meningiomas removed at the end of 2018 after one had become severely necrotic. Even though meningiomas are usually benign, this necrotic tumour had transformed into a higher grade lesion. Now, I am faced with a choice of waiting for it to regrow and intervening with more surgery, or undergoing radiation therapy and hoping that this does not cause the rest of my surrounding meningiomas to grow more aggressively or become malignant lesions.
I have almost completely lost my hearing, and I have vision problems, especially in my right eye.
I am praying for a cure and so thankful for the work that organisations like NF2 BioSolutions undertake, if not for me, then for the patients diagnosed with this disease in the future. Thank you for all you do. ...
My name is Ashlynn. I am 13 years old, and this is my NF2 journey.
I see myself as one of the lucky ones, three tumours in my thirteen years. That may sound like a lot to you, however there are many others who struggle from the same condition as me, with worse cases of NF2. May is NF awareness month (Brain tumour/cancer awareness), where people such as myself strive to create awareness about NF2
From about the age of 10 I started to feel unwell, with many headaches, nausea and vertigo - and then I broke my arm the day before my 11th birthday. Best birthday present ever, yay.
I knew I was dying and was frightened to go to sleep in case I didn’t wake up. It was a priority to tell my family and friends every day, "I love you". At school I worked hard to keep up with my school work, and continued to do as much as I could “normally” with my friends, such as playing basketball and cricket
I remember frequently passing out or blacking out in the middle of the oval, and one of my friends would run to get my teacher. Also, I wound up vomiting on the bus when going to school, which meant that sister had to call Mum to come collect us with a change of clothes,
There were many times I had to stay home as I was too unwell for school, and I had to deal with teachers saying that it was all in my head - that I was looking for excuses to get out of school
Two frightening months passed, with anxiety attacks, fainting, hearing voices talking to me, marching in my ears and seizures. The doctors brushed it off and said it was just my broken arm, until I saw finally saw a doctor who listened to Mum and saved my life.
He had me doing exercises, such as walking on my heels. I couldn’t do this, so he diagnosed me with drop foot. He felt my spine, which indicated scoliosis. The doctor then looked at my clawed hand, and by then the left side of my face was showing signs of palsy.
Mum and I had gone home, and while I was getting ready for bed, mum’s phone rang.
The doctor told Mum that I needed to be seen at Westmead children's hospital as soon as possible, which was the next morning at eight o’clock. We left with nothing packed, thinking it was just going to be a quick appointment, but the nurse told me that I was going to have to sleep over for ‘one night’.
I was a mess, very scared and I stayed up all night even though I was tired. However, I made it up the next day during the MRI when I fell into a deep sleep. They did some investigating after my scans had been processed, and told mum and I that I had a 6cm x 5cm meningioma inside the right ventricular chamber of my brain and as a result, I was scheduled for major brain surgery on October 18, 2016.
Due to the complications of my surgery I felt I was a miracle when I woke from the surgery. Afterwards did feel harder, sitting in the hospital, going through rehabilitation, which felt like years. Face-timing my sister and brother was the best feeling in the world, as well as the worst, as I’d hear my dog and cat crying in the background at my bedroom door when they heard my voice.
It's now 2019 and I’m becoming stronger in spite of the many challenges in my life, such as deafness, limitations to my vision, acquired brain injuries and physical limitations. I also have to undergo regular MRIs to monitor the tumours growing in my body and with every MRI, I always wonder what they'll discover this time. Ultimately though, I don't see my condition as a disability. NF2 doesn't disable me from doing most things - I just have to adapt and work harder to succeed. I want to be ‘normal’, even though nobody is normal.
Go grey for May!
Please make a change in my life through my special donation page; by donating, you will be supporting gene therapy research for my rare condition donorbox.org/ashlynn ...
[Portuguese translation below]
On Saturday, May 4, 2019, Dr Luisa Abreu Santos, NF2 BioSolutions ambassador in Portugal, had the pleasure of being a speaker at the 16th national meeting of the APNF (Portuguese Association of Neurofibromatosis) at the invitation of the same association. It was great to update friends and acquaintances about our fight against these rare disorders such as neurofibromatosis 1 and 2. Luisa was able to present the global organization NF2 BioSolutions that studies and raises funds for innovative treatments - genetic therapy for Nf2! It is these events that allow us to spread awareness and shorten the distance to a cure!Together we will win!
No dia 4 Maio de 2019, o sábado que passou, tive a o prazer de ser palestrante no 16°encontro nacional da APNF( associação portuguesa de neurofibromatose) a convite da mesma associação. Foi muito bom rever amigos e conhecidos desta nossa luta contra estas patologias raras como o são a neurofibromatose 1 e 2. Pude apresentar a organização mundial NF2biosolutions que estuda e reúne fundos para um tratamento inovador -terapia genética da Nf2! São estes encontros que nos permitem ir sabendo mais e sendo menor a distância para a cura!
Juntos venceremos! ...
Andrea was diagnosed with NF2 at the age of 9. It all started when she woke up one morning with the right side of her face paralyzed. Testing determined that Andrea has tumors on both her left and right hearing nerves (vestibular schwannomas) as well as several other brain and spinal tumors. This news was devastating to Andrea and her family, they live each day in fear of the complications NF2 will present.
There is no cure for NF2 and treatment options are limited to high risk procedures. It is common for NF2 patients to have several brain and spine surgeries throughout their lifetime. However, Andrea also has a bleeding disorder called Von Willebrand that makes surgery extra risky and the medical teams in her home country do not feel equipped to manage her condition. Due to these complexities Andrea must come to the United States for her care. Despite the financial burden of seeking U.S. medical care without insurance, Andrea and her family feel strongly about receiving the best care. She is currently monitored by a top NF2 specialist at Mass General Hospital in Boston.
Andrea is now 13. Since diagnosis, her tumors have doubled in size and one is already touching her brainstem. Gene therapy research is the best hope for finding a cure. Please join us in supporting NF2BioSolutions on their mission to forward gene therapy research for NF2.
Donate in honor of Andrea: donorbox.org/forandrea ...
“When Laurel was diagnosed someone said to me, “at least it isn’t cancer”. And while I would never want to watch my child battle cancer, watching her battle NF2 is just as frightening. With NF2 there is no remission. There is no confident treatment. There is no approach without significant risk. We watch and wait because available treatment options could lead to even worse outcomes. The fact that we have to watch and wait is inexcusable. To force a patient or a spouse or a parent to watch their child wait for their body to destroy itself is emotional torture.” - Jill
Jill’s daughter Laurel was diagnosed with NF2 at the age of 10. In April 2018 she had a tumor removed from her cervical spine and in December 2018 a tumor was removed from her nose. She also has bilateral vestibular schwannoma’s - tumors on her right and left auditory nerves that will need to be removed at some point. With each MRI Laurel and her family wait to hear if any new growths threaten her body. Please support NF2BioSolutions in their goal to accelerate gene therapy treatment for NF@ so that that families like Laurel’s do not have to live in fear of her future.
Donate at ineedacure.org ...
Special thanks to the Gingerich Family Neurofibromatosis Society of Ontario who presented a check today for over $11,000 to NF2 Biosolutions in honor of their daughter Carly. Her twin sister Allie, older sister Kate and mother Karen presented the check today at the NF Ontario 2019 Conference to our board member John Manth. ...