Wednesday 18 March 2015

Another Naevus Global Board Meeting just finished.
I am currently doing a term as President of Naevus Global.
I am always left in wonder at just how small our world really is. It was still well in the dark side of Thursday Morning for me and so far into Wednesday night that it was almost Thursday for others and still afternoon Wednesday for others. We are scattered all over the globe and yet we are able to meet, face to face, and talk in real time. We all face the same challenges and have the same hopes for our own families and the CMN communities we look after.
I recall how very alone I felt in the early days after Danielle was born and yet now we have this amazing worldwide network of people who not only understand us but who, like us want to make a difference for those who follow.
These people have become a special kind of family.
What a wonderful way to start the day! ( now can I go back to bed?).

Sunday 15 March 2015

On Friday night I again found myself explaining to people, who find it hard to understand why we find it so difficult to fundraise for our support services and research, why this is the case.
It is a hard concept to grasp, especially when there are some charities who seem to have more money than they need, when we cannot access government support or funding, when some have paid employees doing what we do as volunteers, when what we are doing has such a high impact not just for our families but for the broader community.

So the first question is what do you do.
We support new parents to find the correct information and to connect them to others if possible nearby, so they don't feel alone and have the opportunity to create a support network.
We support youth with CMN so that we can improve particularly the social and mental health outcomes for them, with the aim of creating strong, happy confident adults, who see the world as a challenge and not their challenge as the world. 
We support parents and children on various parts of their journey with CMN and the many questions and challenges that arise with it along the way.
We support adults with CMN to connect with others and to provide mentorship should they wish.
We connect and bring together families affected by CMN.
We have a school/childcare pack ( currently under review and hopefully to become available in a booklet form soon).
We work to educate the broader medical community by attending meetings, conferences etc.
We do what we can to raise public awareness of the condition and to educate the broader community.
We have a website.
We have several need specific facebook groups.
We have our public facebook page.
We attend markets etc with our mobile display.
We hold our Youth Camp.
We hold our Conferences.
We hold regional get togethers.
We lobby for regulatory changes on issues that affect our community.
We support and encourage research into CMN and related issues, with the most recent being a study on mental health outcomes of mothers who have a child born with visible difference.

I wont start on the list of what we COULD do if we had the funding!

We do all of this on a shoestring budget at best.

So how is our work broader than just CMN - well ......
We focus on CMN of course but we also educate, support and encourage research into related things such as Bullying, Melanoma, Hydrocephalus, coping with a visible difference, Maternal and Paternal mental health, Wellbeing of children and Youth, Self esteem ...... it is a pretty broad list!

So if we are achieving all of this on very little and proving such valuable outcomes, then why is it so hard to get cash flow support -
Because we ARE NOT POPULAR. It is not that no one cares about us, they just can't see themselves as ever being affected by this. We are RARE.

You talk breast cancer - half the population are scared they will get this, the other half are scared someone they love will get this. In fact the same goes with most cancer support and research. People can relate to it and can imaging it affecting them or a loved one.
Talk drunken violence - same thing. It is popular, people can imagine being affected by it, so they support it.
Autism - well everybody knows someone who is dealing with it on a daily basis, so they can relate.

Now lets talk CMN and the room goes silent. If someone is not affected by it then they cannot see the possibility that they will be. Then is the question of how do you explain this very complex condition and possible complications in a quick chat over a glass of wine? It is too complicated. It needs more time.

So all of our cash flow support comes from those affected by CMN directly in some way. They may be a friend of the family but they still connect back to us in some way.
How wonderful it would be to be the recipient of some grants to help us. Unfortunately because of our numbers and rarity ( or lack of popularity) we are rejected more often than not. This is often because of our geographical diversity. Most grants are for local communities and we are not local to anywhere.

Do we have ideas and projects that we could run with at short notice if we had the funding - YES!!!
Oh how we dream of that day.

So when I meet someone and am introduced as the director of Nevus Support, and I am asked what Nevus is, usually the best I can do is a quick ' it's a birthmark condition' and then get their card so I can send them the website link.

No one wants to hear our long story over a glass of wine.

So we continue to rely on grass roots fundraising and direct support from our community and we sincerely thank those of you who are supporting us to achieve our goals. Without you we would be no more than a Facebook group.

If you have any connections that could help us with this please let us know.       

Tuesday 10 March 2015

So this 'Blogging' is something new for me

So this 'Blogging' is something new for me.

I am not sure of the rules of blogging or just what I am supposed to write but I guess I will figure it out along the way.
I am not sure how regularly I will get to contribute but I will aim for once every couple of weeks if I can, so I can keep all who are interested, up to date with what is going on here at Nevus Support.

I wonder how many of you noticed our new website?

We did get a couple of emails and messages from people who did notice, thank you.

There is still some work and fine tuning to be done on it but at least the framework is up. If you pick up any editing errors please send us an email so we can fix it. Tired eyes don't always pick up everything!

I want to thank Alan, who has spent countless hours (and many late nights) around his work, family and community commitments to put it all together for us.

I would like to share with you all what is happening in New Zealand and Southern Asia in regards to patient advocacy groups for CMN but that will be another post I think. Suffice to say some very exciting things are happening for these regions and Nevus Support will be there to help them in any way we can.