With people joining us from both sides of the Atlantic, there was some very interesting discussion at the most recent Nystagmus Network forum for adults with Acquired Nystagmus and Oscillopsia. Symptoms It is always reassuring, particularly for new members of the group, to hear the wide range of symptoms others are experiencing. These range far … Continue reading Notes from the January AN/Oscillopsia Forum
Category: nystagmus networks
Nystagmus Networking
With a most difficult year now thankfully behind us, the Nystagmus Network is here to support the nystagmus community in any way we can. Keeping you connected Virtual meet ups for people living with nystagmus, or supporting someone who does, resume this month. For parents There will be a virtual parents’ forum at 8pm on Tuesday 12 January. … Continue reading Nystagmus Networking
Living with Acquired Nystagmus and Oscillopsia?
The Nystagmus Network runs a virtual support group where people living with Acquired Nystagmus and/or Oscillopsia chat together on email and on zoom to share their experiences and try to find answers together. If you’re living with AN or oscillopsia and would like to join the group, you’d be most welcome. At our recent virtual Open Day we were … Continue reading Living with Acquired Nystagmus and Oscillopsia?
Nystagmus Network launches Nystagmus Youth
As part of the Nystagmus Network virtual Open day 2020 and as a new initiative to get younger people involved with the Network, the charity is creating a new online community for young people living with nystagmus. This community begins on Instagram and is a place for young adults and teens to share their stories, … Continue reading Nystagmus Network launches Nystagmus Youth
Your nystagmus research questions answered – question 3
We asked a group of Nystagmus Network supporters what questions they would most like to put to nystagmus researchers. Then we found researchers to answer them. Your questions were answered by Question 3: Would it cause more problems to stop the eye wobble? (HL) We have very poor understanding of nystagmus, why it occurs and … Continue reading Your nystagmus research questions answered – question 3
Your nystagmus research questions answered – question 2
We asked a group of Nystagmus Network supporters what questions they would most like to put to nystagmus researchers. Then we found researchers to answer them. Your questions were answered by Question 2: Why isn’t there a focus on cure? (JS) Sometimes people’s focus changes from cure to what we can do right now to … Continue reading Your nystagmus research questions answered – question 2
Your nystagmus research questions answered
We asked a group of Nystagmus Network supporters what questions they would most like to put to nystagmus researchers. Then we found researchers to answer them. Your questions were answered by Question 1: Will there ever be a cure for nystagmus? Answer: (JS) Nystagmus is the result of a lot of different things going wrong. … Continue reading Your nystagmus research questions answered
Parent Power and networking lunch in Southampton
Parent Power, funded by the National Lottery Community Fund PLEASE NOTE – BOOKING NOW CLOSED The Nystagmus Network invites parents and carers to attend the first of our Parent Power education workshops. Venue: Southampton Sight, 3 Bassett Avenue, Southampton, SO16 7DP Date: Saturday 12 October Time: 10am to 2pm The aim of the project is to empower parents … Continue reading Parent Power and networking lunch in Southampton
Manchester meet up
The next meeting of our new North West nystagmus network will take place on Saturday 7 September in central Manchester, 10am to 12 noon. Nystagmus Network trustee, Marie Turnbull will once again be your host . We look forward to welcoming back the families and adults who came along last time and to seeing some … Continue reading Manchester meet up
Support for adults with nystagmus
Whether you’ve had nystagmus all your life or have acquired it more recently, the Nystagmus Network is here to support adults with the condition, with information, research updates, news, meetings, membership and more. Or why not get involved with one of our fundraising activities?