Welcome to Bee for battens

Welcome to the Bee for Battens, the Irish based online campaign for raising awareness & supporting those affected by Battens Disease.

By raising awareness & working together we can all do our bit to help those affected by this rare neuro-degenerative & always fatal condition, which affect babies, young children & juveniles in Ireland and across the globe!

We want to change that, and we need your help. Wherever you are or what ever you do, you can help us to create a BUZZ  about Battens.

Visit our How You Can Help page, where there are lots of ideas and ways where you can BEE the difference in helping raise funds to further our goals! Presently our top priority is to fund some of our affected kids on medical trials in the near future, & to give hope those affected families.

You can also Join Us in achieving our goals, become a Supporter  or if Battens Disease affects you or your family please contact us, where you will find out that you not alone in fighting this devastating disease.

    What We Do

In the past it has been very difficult for parents to find any information at all about this illness. The rarity of the disorder means that few doctors are aware of it and parents of course want to know, on a practical level, how they can best help their child.

We at BEE FOR BATTENS will maintain an informative website and provide a family contact network within Ireland & Worldwide.

Our Support Programme for Families and Communities will provide:

Newly diagnosed family information packs
State-wide Resource Information For Health Care and Specialist Support Organisations
 
Encourage and provide assistance to community fundraising and awareness including merchandise sales and donation packs.
 
Maximise the opportunities of persons affected by Batten disease
Ongoing contact, not only with the family but their extended family, friends, field specialists and general public
 
Educate all concerned about the special needs required
Lobby local health agencies and educational facilities on behalf of families.
 
Provide those affected by Battens Disease access to specific publications on each type of NCL.
 
Liaise with international counterparts regarding family support & with funding research projects working towards a treatment and cure
 
Bereavement support

We will also act as the national registry for NCL researchers throughout the world and endeavour to support their work.

      How We Do It  

Bee For Battens is operated & funded by The Saoirse Foundation, a Non Profit Volunteer Based Charitable Organisation for Battens Disease. Our Support & Research activities completely rely on fundraising and donations from the public and private business sectors.

Also why not   where our most up to date activities are shown, or check out Tony Heffernan's page . 

www.kerryfreetoair.com