In 2020 Ahrian offered the Nystagmus Network her services as a volunteer. So far she has designed the logo for the @NystagmusYouth Instagram account and the new T-shirt for our 19-21 challenge.
Ahrian has nystagmus herself and wanted to give back something to the nystagmus community. She says: “I was born with nystagmus and grew up really anxious about it. It was really bad when I got nervous (which was 80% of the time) but then I realised I could take control of things like that. I learned to work with it and be proud of who I am. I was a competitive cheerleader for 10 years and loved tumbling, although it made me feel super dizzy!”
This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!
Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020.
Are you looking for a new opportunity to give your energy, time, skills and talent to support a small charity?
The Nystagmus Network is looking for people who would like to help the work we do as a volunteer, or join us as a Trustee to guide and direct the charity’s work.
The skills, talent and experience we would be interested in are:
- Volunteer Management/Networking
- Corporate Law
- Clinical Practice
- IT and Web Design
For people considering offering their services as a potential Trustee, the minimum time commitments are one full Saturday four times a year, an evening or daytime phone call every 6 weeks, attendance at the annual Open Day and support for Nystagmus Awareness Day. Trustees have particular legal responsibilities under charity law.
If you have time to give us, then please drop us an email at [email protected] with a brief summary of how you would like to get involved and the skills and experience you have to offer. We will then be in touch.
We welcome interest from people with and without nystagmus.
A new research project is being undertaken at Moorfields Eye Hospital and University College London. The aim of the study is to understand better the visual abilities of people with congenital nystagmus, with a particular focus on visual crowding, a phenomenon which occurs when an object that is visible in isolation becomes impossible to recognise when surrounded by other objects.
The Nystagmus Network is supporting Mr Vijay Tailor, Paediatric Clinical Trials Research Orthoptist and Clinical PhD Training Fellow, to recruit suitable participants.
Subjects should have a formal diagnosis of Congenital Idiopathic Nystagmus and be aged 18 to 50.
People who also have albinism or strabismus amblyopia (‘squint’ or ‘lazy eye’) are not suited to this particular study.
If you have short or long sight, this is not a problem provided you wear prescription glasses or contact lenses to correct this.
If you would like to find out more about the research project and apply to take part then please complete and submit the form below. By completing the form you are giving us permission to pass on your details to the relevant research team.
As we all go into 2017, are you looking for a new opportunity to give your energy, time, skills and talent to support the Nystagmus Network? We need people to join our team of volunteer Trustee to guide and direct the Nystagmus Network. Trustees have particular legal responsibilities under charity law. The skills, talent and experience we are particularly interested in are:-
- Charity governance and legal expertise
- Financial knowledge and accounting
- Research commissioning and review expertise
- Risk management and auditing
- Fundraising – and energising others
As a minimum commitment, Trustees need to be able to attend meetings in London on a Saturday once a quarter, and to join other meetings of at least one of our sub-committees by phone perhaps every two months or so, and have the time to invest in some support work and planning activity, probably taking up a few more hours a month. We will meet reasonable travel expenses.
If you have time to give us, then please drop us an email at [email protected] with a brief summary of your skills and what you can bring to the charity to help us grow and develop. We would like to start talking to prospective new trustees from the end of January.
If you have any immediate questions, then feel free to contact our Chairman, Richard Wilson, on 07964 887 104.
Today we are excited to officially announce our new volunteers at the Nystagmus Network! Earlier this year we started a recruitment drive to find people who were passionate and committed to supporting the nystagmus community as part of our peer-to-peer support model.
The charity was inundated with applications, ranging from adults with nystagmus to healthcare professionals. Following a short review, we are delighted to announce that the following people will be joining the Nystagmus Network as volunteers:
- Rachel Thomas who is a parent to a child with nystagmus
- Elizabeth Jones who has recently qualified as an Orthoptist
- Nikki Espiner who runs the Wobbly Days for Nystagmus Families Facebook group and has a child with nystagmus
- Jenny Rose who has acquired nystagmus associated with ataxia
- Julie Stewart who runs the Wobbly Days for Nystagmus Families Facebook group and has a child with nystagmus
- Jamie Chapman who has congenital nystagmus
- Sara Riggs who is a parent to a child with nystagmus
- Penny Marsh who moderates the Nystagmus Network Facebook group and is a parent to a child with nystagmus
- Leanne Leung who is an optometry student entering the second year at MCPHS University
- Jen Martin who is based in Canada and will help us signpost families from North America to the appropriate support services and to offer advice
“Volunteers help us support our community!” – Richard Wilson, Chairman of the Nystagmus Network
How to contact our volunteers
Each of our new volunteers will play an important part in the work we do at the Nystagmus Network. They will be a direct link to the nystagmus community and they will be the main contacts for our new call back service the charity offers which can be accessed here.
Along with being very active on social media (such as our charity Facebook page) they will also use their experience and expertise to respond to queries submitted through our website here.
The benefits of our volunteers
One of the main benefits of this volunteer service is that anyone who contacts the charity will be able to speak with someone who completely understands their own personal situation. This means that an adult with acquired nystagmus will be able to speak to another adult with the condition, while a parent to a child with congenital nystagmus will be able to speak with another parent. Through this new peer-to-peer support model we believe we will be able to better support the nystagmus community.
We hope you will join us in welcoming all ten of our volunteers to the charity and we are sure they will make a big difference! If you have any questions about our volunteer service you can get in touch with us here.
Have a great day from everyone at the Nystagmus Network!
The Nystagmus Network is on the look out for more volunteers to help us support our growing community!
We believe that a peer-to-peer support model will make a huge impact on everyone in the nystagmus community. This model is based on support being provided by people who understand the impact of nystagmus on the various groups the charity supports. We want our volunteers to empower parents, teachers and adults with nystagmus and help us build a team of nystagmus specialists to support further the work of the charity.
The volunteer role
We believe that it is important that we have volunteers who are specialists in particular areas which the charity supports. So, we are asking for those people who are willing to answer any emails and / or phone calls from people from the following groups:
- Parents – babies
- Parents – school
- Teachers – early years
- Teachers – primary
- Teachers – secondary
- Adults – acquired nystagmus
- Adults – congenital nystagmus
All volunteers will be required to adhere to our volunteer policy and they will be given training to undertake their role.
If you think you can make an impact and would like to volunteer for the Nystagmus Network please complete the form below. We will be in touch once we have reviewed your application and thank you for supporting the Nystagmus Network!
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