Aoife O Donovan’s Personal Story and NFPU Young Ambassador Training in Vienna

My name is Aoife O Donovan. I am 31
years old from Cork. I have
Neurofibromatosis type 1 (NF1). I was
diagnosed at 6 weeks of age. I am the
first person in my family to have the
condition and there has yet to be any
further family history of the condition.
In the future, there will be a 50%
chance of passing this rare disease on
to any children I might have.
I have been very lucky with the
condition. The main difficulties I face is
back pain that comes off and on. I have
a small growth (neurofibroma) on my
chin which developed in early
childhood. It has been kept under
control with multiple surgeries,
starting as young as 14. This particular
neurofibroma started to grow when I
was around 8 or 9 years old. Over the
years some smaller neurofibromas have

started to grow as well but that is fairly common of
the condition.

Alongside having NF I also have Aspergers Syndrome (ASD). This is probably one of my biggest
hurdles in life. I struggle with social and interpersonal skills. I have good supports in place for
my ASD.
Over the years, I have always loved learning, and I have completed many PLC QQI courses. I
have done them in Office administration, art, and childcare to name a few. The challenge I
have here is not in the coursework but when I go on work placement. I have found that people
find it hard to understand my additional needs and don’t give me a fair chance. My NF is not
very visible and I manage to mask my ASD to a certain point before I cant hide it anymore and
my social skills fall below what is deemed “normal” in society.
So, I tend to not be able to hold a job for very long, despite wanting to learn and work. As a
result of this my mum helped me to set up a small business embroidering teddy bears as I
could do this from the family home, with mum who understands and doesn’t get offended if I am too blunt or honest. We can embroider any message onto a wide selection of bears for all occasions.
Mum has also started to teach me how to use knitting machines and I am really enjoying that
too. I love crafts and enjoy crochet and diamond painting. I really enjoy making blankets and
baby clothes.
In July 2022, through the Munster NF support WhatsApp group, I 1st saw the opportunity
about this trip to Vienna. I was excited by this and contacted Fergal at NF association of Ireland
to find out more. A full week in Vienna, Austria. A chance to meet other young people with
NF1, NF2 and Schwannomatosis from around Europe. It was an experience for those aged 18-
30 who either have the condition or were related to someone with NF. Each participant it
turned out, had NF. Lots of workshops, and lectures which would lead to us being able to
become young NF ambassadors for our home countries. I jumped at this opportunity.
There was lots of planning to be done behind the scenes to get me there, registration, and
flights to be booked. NF Ireland paid for my flights and NFPU (Neurofibromatosis Patients
United), the European organization who ran and funded this program, covered transfers,
accommodations, meals, and sightseeing activities.
After a three-hour flight delay, I finally landed in Vienna. I was met there by two members of
NFPU, Claas and Fika, and another participant who is from the Netherlands. From there I was
accompanied by train to the first accommodation, in South Vienna. Steinschaler Hunderhotels
im Dirndltal, located in a rural near the mountains. WOW. Such a beautiful scenic location.
Beautiful gardens and such a peaceful atmosphere. This was a dog friendly hotel. The outdoor
pool was lovely with a view of the mountains while you swam. The many gardens to explore
were so beautiful and peaceful. You could get lost for hours in this amazing space. The food
here was amazing, so fresh and light. I really enjoyed the native berry fruit juice; I believe it’s
called dinde berry. The staff here were so pleasant and helpful for all our needs. It’s definitely
a place I would love to return to sometime in the future.
Once we arrived here, we had some time to settle in before going to lunch, where most of
the rest of the group joined us. After lunch we met together to get to know each other a bit
more with games to remember each person’s name. This is where we met Agatha, and Gabby.
Agatha is a psychologist, and she was such a delight to meet and work with. She did some
beautiful work with us over this weekend of teambuilding and getting to know each other.
Together over the weekend we got to, make posters about ourselves and where we were
from, what we enjoyed doing and about our experience as a NF ambassador. Then once this
was done, we went outside to present ourselves to the group. Here we were able to get a
deeper insight to each participant and ask them questions about them a little more.
There were various games and talks to discuss our emotions and reasons for being there.
We traced our hand and had to find something positive for each finger. We were taught to
use our hands as our resources. Our thumb was our greatest strength. Our pointer finger

another good strength we had. Our middle finger was to represent one strength we had that
is seen by others, our ring finger was to represent a strength we have that is helpful to others,
and our little finger represented a strength we could work on and grow. We spent some time
working on this and writing it down. Then we divided up into small groups and shared our
personal hand of resources. Our group then had to come up with a superhero name for us.
Then we reconnected as a full group and shared what we found out about each other and
each person’s superhero name. The small group I was in gave me the superhero name “tough
needle,” due to the fact I enjoy crochet and my determination.
We had a campfire one of the evenings. We cooked some bread over the fire and Agatha had
some firebreather powder. Here we were asked if we wanted to take some and think on a
negative thought and to put that energy into the fire and watch as it went up in flames. This
was such an emotional experience.

On the Sunday, our last day at this
beautiful accommodation we
gathered together. Each of us were
given a soft candy and a hard nut. We
were asked to think what on what our
highlight (soft nut) and our most
challenging moment (hard nut) was
and share it with the group. We also
made little boats with wine corks and
paper and wrote on the sails one
personal goal and one goal for the
group. We walked to the river to set
them on their journey, as we said our
goodbyes to Agatha and Gabby, then
made our journey to Vienna City.
Before we left, we each had our name
in a hat and picked one out. Here we
were asked to perform a random act
of kindness for the person we choose
at some point in the week.

We drove into Vienna, and arrived at Magdas Hotel, and had some time to unpack and walk
around, before gathering for lunch. Magdas Hotel is staffed mainly by refugees, there are
given a chance to work and build up their experience.
In the evening, a few of us went to the local amusement park, one of Europe’s largest in fact,
weiner Prate. We had fun on some attractions and took in our surroundings. We were lucky
that it was only a ten-minute walk from our hotel. We enjoyed our evening before heading
back to the hotel for a good night’s sleep.

On Monday, after a good breakfast, we met together, and Claas gave us a general introduction
to the NF Academy. Then Andy Fumolo took the floor and gave us our first lecture on,
Presentation Skills and Media Training. It was very insightful and engaging. Andy covered
everything you could think of in this subject including how to make a good presentation, how
to engage your audience, how to show confidence, and how to have good body language. He
showed us how to get our point across quickly and clearly without overloading our audience.
He taught us how to prepare for questions and answers and how to be able to answer difficult
questions. This lecture really helped me gain a lot of self confidence.
We broke for lunch and in the afternoon, we got to practice within smaller groups the new
skills we had learnt. Later we gathered back as a whole group, and a few brave participants
gave a go to present to the full class, and responding to some awkward questions. There was
lots of time for feedback and follow up questions for Andy.
After a small break we went to the city of Vienna for a wonderful walking city tour. Our guide
was so funny, informative, and engaging. I really enjoyed seeing all different parts of Vienna
and learning about the cities culture and history. My favourite part was seeing St Stephens
Cathedral. It was so beautiful. We thanked and said our goodbyes to the tour guide. Some of
the group was going to a classical concert that evening, while the others went for a dinner in
a nice restaurant. We ate up on the balcony overlooking the river in Vienna while the sun set.
It was so beautiful and relaxing, and the food was really nice too. We took a nice slow walk
back to our hotel.
On Tuesday we met Dr. Ignacio Blanco, via online video call to cover NF Clinic and Science.
This was a very interesting presentation and discussion and even led to conversations on
Family planning. As young people with NF we were very interested in these topics and gained
great insight. There was also time for questions and answers with Dr. Blanco afterwards.
After lunch, Claas gave us as presentation on Medical Care of young patients with NF. This
gave us a good insight on what doctors we can reach out to in order to have a full holistic
team of supports available to us. It was so in depth and interesting to see how this team of
doctors can cover so many aspects and learned about how to self-advocate and help different
doctors to communicate with each other so the best possible care can be given.
After this we had the afternoon to ourselves to do as we wished. I took a walk with some of
the girls in the local park to get some food and later I decided to go back to the Weiner Prater
amusement park, as I really enjoy those places.
On Wednesday we had a great lecture on the topic of Psychosocial Dimensions of NF by Dr.
Thomas Pletschko. This was very insightful and coved the psychosocial aspects of NF1, NF2
and Schwannomatosis. It really helped as it brought the whole weeks training together in a
holistic point of view. It covered how to talk about NF, how to tell friends, family, or a partner
about the condition and how they can support you. Its often a hard topic to bring up and this
lecture helped offer advice on ways you can approach it. After lunch Claas talked with us on

psychological support for young patients. Here we discussed who can support us and in what
way. It helped me understand so much about the importance to have a team of doctors who
can support all issues around NF. Its not just about having a good GP, but also to have good
NF paediatrician, neurologist, psychologist if needed etc. This really helped me to realize that
the right supports are out there, but that I need to seek them out.

After a short break we then headed into the
city again to tour the museums in Vienna
and do some shopping. I enjoyed the
shopping street and all the different shops
and restaurants that was on offer. It was a
real pleasant way to unwind and take in
once again the beautiful city we were so
fortunate to be able to visit as part of the
academy.
On Thursday we met together with Claas,
and we were joined online by Hanna Gsell.
She spoke with us about CCI (Childhood
Cancer International) and how important It
can be to have an advocate if you need one.
She also talked about PPIE (Patient and
Public Involvement and Engagement. This
again on the importance of patient
involvement and feedback.
After lunch we met with Julia Glocker who
was part of the Vienna Pink Dragons, a local
Rowing club. She gave a presentation on the
Pink Dragons which was very interesting.
We were invited to join her to go rowing on
a huge paddleboat, where we all got into
the one boat and paddled around a big lake.
We had a short lesson first on how to paddle
and follow commands of the person leading the boat.

We carried the boat tighter down
to the lake. We had to work as a team and
paddle in sync at the same time it was such an amazing experience. All rowing in sync. We
had to count out the strokes of the paddle together to get the rhythm. At one stage we were
all counting in different languages. There was English, German, Dutch, Irish, Portuguese, and
Russian. It felt so powerful all the cultures coming together in this moment.

After we finished and carried the boat back to where it came from, we went for dinner in a
beautiful restaurant that had a dock overhanging the lake. It was really nice to sit and talk
after such an amazing experience. The food at this restaurant was amazing.
On Friday after breakfast, one of the girls and I hired out electric scooters and took a spin
around the nice park near the hotel and rode to the university to take a look at the beautiful
buildings there. It was a lovely fresh morning, and we reflected a little on the whole week.
We exchanged information to keep in contact as we really wanted to continue our friendship.
Once we returned to the hotel, most of the group had packed up to leave as this was the final
day of the academy. We met one last time in the meeting room to discuss how we found the
academy and what we thought would be helpful in future academies. Then the group
surprised me very much by brining out a birthday cake for me and Michaela. They had even
written our names on it. I was so touched by this beautiful kind gesture. After cake, we had
lunch and then we met outside in the hotel garden to be presented with our certificates for
completing the academy. After lots of pictures it was time to say our goodbyes. Lots of hugs
and for me tears as this amazing moment came to a close. I’ve met some amazing people here
who will remain lifelong friends. I will never forget this amazing opportunity I was blessed
with.
On Saturday morning I got my flight home and I must say this is one trip I will never forget.
Thank you to NF Ireland for helping me in my travel costs to get there. Thank you to NFPU for
an amazing Academy. Thank you, Claas, Michaela, Gabby and Agatha, for making the
Academy the best possible experience it could be. And thank you to the sponsors,
Springworks and Alexion for helping to fund such an amazing program. Thank you also to all
the amazing young people that I met in Vienna on this program. You were a pleasure to meet,
work with and get to know. To any young person who might want to do this program in the
future please do. You will not regret it.