Happy New Year to you all,

Welcome to the first e-newsletter for the Vein of Galen Support Group ever!

Since the end of last year a lot has been happening!

Firstly, our group has formally come into being thanks to the support and advice from John Forman the Executive Director of NZORD (New Zealand Organisation of Rare Disorders). Our support group has been listed on the NZORD website (www.nzord.org.nz) and now we exist.

The next exciting thing that has happened this year is that NZORD has offered our support group a website which they will fund through the sponsorships that they receive. This is very exciting and a huge step in the right direction towards achieving our support group aim.

A refresher of our aims:

Our support group aims to provide information and support to families of children with Vein of Galen Malformation and to promote awareness of this condition in both public and medical communities.

We hope to achieve this aim by:

• Providing a web site with current information and research about the condition that families and medical professionals can refer to.
• Promoting positive connections between families enabling them to communicate and to support each other going through the process of surviving to thriving.
• Sharing of information on the condition and on raising a child with the condition that all members can contribute to.
• Organising get togethers and activities where possible.
• Publishing an e-newsletter half yearly to members of the support group.
• Communicating with members through group e-mails, mail and phone calls if and when members need information and support.

I have been working hard on putting together some information about Vein of Galen Malformation from the information that I have for the website. It has been quite an interesting process and has highlighted for me how little I actually know about the condition and how little and widespread the information is currently on the net.

Yesterday I met with Benedict Chapman who is designing and will manage our website for us. He has had lots of experience designing and managing websites for other medical support groups. He has lots of ideas and has given me lots to think about. He is working on a logo for our group. We discussed the logo incorporating the themes of support, veins/coils and he is thinking about a koru design symbolising these things. If you have any ideas please let me know so I can forward them to him.

He would like to include photos of the children on the pages of the site to make it look interesting and more friendly. If you have a couple of photos that you wouldn't mid having published on the site please send them through to me and I will forward them on.

Thank you to those of you who have written personal stories about you and your child's journey. They are wonderful and Benedict and I know that they will offer huge support to other families when they read them. If you would like to write your story and have it included on the site then we would only be too happy to publish it.

I have also had a meeting and been corresponding with Meg Seow who is a senior nurse who looks after the Vein of Galen patients and families in New Zealand. She has checked the information for the website is all medically correct for us. Last year Meg presented a talk about Vein of Galen Malformation at a national nursing conference. This was very exciting for me and my husband Simon as she asked us to help her with the presentation. She wanted to included a our perspective on having a child diagnosed with Vein of Galen and our feelings and how we manage as a family as well as the medical side of the condition. She really wanted to make the point at the conference that it is not just a condition that is being treated it is a family. She raised the awareness not only of the condition which is so important in terms of being diagnosed and picked up early but also on how families are treated makes a huge difference. Meg has kindly agreed for her presentation to be included on the site which is great. Thank you Meg.

I have also been talking with Meg about doing a "commonly asked questions and answers" page for the site with the possibility of having a form that can go through to her for people to ask their own questions.

I think that it would be good to have a page that is for parents that have just had their child diagnosed with vein of Galen. I thought it would be good to keep it brief as it is such an overwhelming time when your child is first diagnosed especially if they are fighting for their life and going through surgeries. I am wondering if anyone who has more recently gone through this would like to give me a hand on putting this together. I thought it may include: where to now, who to talk to, questions to as, survival....

Any other ideas for the site?? Let me know. I want it to be a reflection on all of us as a group and for all of us to have input.

Once the site is up and running then we will be able to start a forum! That way we will be able to chat even though we are so spread out. Won't that be great. Well I guess that is all for now.

Will let you all know when more things happen.

Hugs to bubs
Bridgette Wright
Vein of Galen Support Group
Co-ordinator