June 3-5 Batten Disease Awareness Weekend

Press Release:  June 1, 2011 (Reynoldsburg, OH) – Batten Disease Support and Research Association (BDSRA) is holding its 3rd annual Batten Disease Awareness Weekend, June 3-5, 2011 to bring recognition to a rare but devastating disease. Batten disease is a genetic neurological disease that brings an early death to each child it affects. The disease may not be well known, but its effects on a family can be seen in numerous cities and towns around the country.

“Approximately 30 children will be diagnosed with Batten disease this year, and about the same number will also pass away before the end of 2011”, said Adina Ryan, development director for the BDSRA. “That is simply too many children and families who will not get to celebrate their 3rd birthday, play little league, or simply fulfill all the plans and dreams that every mom and dad wished for.” she continued. "Our only hope is that scientists and researchers will find a cure that will save future generations of our children," she added.

While there is hope in research for a treatment or cure, the funds are hard to come by. Families around the world will be doing their part this weekend to raise both awareness and funds for children suffering with this fatal disease. You can help spread awareness about the cruelty of this disease. On June 3-5, 2011, please take a moment to tell someone about Batten disease and how it can steal a precious child’s hopes and dreams. You can also donate to the Batten Disease Support and Research Association by visiting our website at www.bdsra.org. Every story and every dollar makes a difference. The cure depends on us...we depend on you.

A Deadly Disease with No Cure

Batten disease is a genetic neurological disorder that affects children and adolescents. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden, and unable to communicate. Presently, there is no effective treatment for the disease and the disease is always fatal.


About the Batten Disease Support and Research Association

The Batten Disease Support and Research Association (BDSRA) is the largest support and research organization in North America for families that have children with the disease. "Over 50% of our annual budget goes toward research, and more than 96% of our funding is provided through families of children with Batten disease and private contributions," said Lance W. Johnston, Executive Director. "In order to find, and fund the cure, we simply have to broaden our horizons and get more interest in helping these children, said Adina Ryan, Director of Development.

BDSRA has been supporting families with programs, services and research funds since 1987, and we encourage you to visit our website at www.bdsra.org or call 800-448-4570 to learn more about Batten disease and what you can do to help.

Brenna Colleen Greig

June 20, 1989 - September 21, 1997

"You will miss her."  It was said with brisk but genuine sympathy...."Like a fibre gone from my heart."

"Do not marvel at this, because the hour is coming in which all those in the memorial tombs will hear his voice and come out...."  John 5:28,29

Susan/Salynne©2011

  

I AM a Self-Published Author

On Friday I was able to attend an excellent workshop sponsored by the Writers’ Union of Canada and Canadian Heritage entitled: Secure Footing in a Changing Literary Landscape.

This professional development symposium for writers was so inspiring for me that I have barely been able to sleep since attending. Deborah Windsor, the Union’s executive director, discussed authors’ contracts which was informative and helpful if you are considering going the route of getting a traditional press to publish your work. Information from authors Betsy Warland and Ross Laird outlined the huge changes in the literary industry. What really fired me up was the information they gave on the innovative digital and Internet opportunities that are out there for people to take advantage of. The world-wide web has spawned new pathways and creative venues for publishing and it means re-thinking what we are currently doing and how to take advantage of the constant barrage of new technology.

The entire publishing industry has been turned on its head and many of the long-established bastions of literary production are now publishing, not manuscripts that have been submitted in the traditional way, but books based on what people are reading on the Internet. A good example of this is the book/movie Julie/Julia; another case in point is Ree Drummond, The Pioneer Woman whose successful blog created such a stir that a traditional publishing company offered her a cookbook contract.

The most gratifying point for me was Ross' comments about self-publishing. He profiled several authors who have become very successful selling their own work and explained that the days of vanity publishing "shame" are now over. For those of you who don't know what I'm talking about, self publishing has been viewed as derogatory often implying that the author is only printing their book out of vanity and that the work would not be commercially successful enough for a traditional publishing house to take on. Curse the fellow who invented the term. Many companies, including the Writers Union of Canada now offer printing on demand and this is allowing authors, who have stories to share but who may not have been able to get a traditional press to look at their work, to become very successful. Did you know for example that if an author in Canada sells 5,000 books they are considered a best selling author? With the world wide market of the Internet available that it not such a difficult feat.

Those points all brought tears to my eyes. I wanted to stand up and shout the proclamation, "My name is Susan Greig and I AM a self-published author. I had four books sell in a bookstore & now my books sell all over the world on the Internet!" As detailed in my previous blog the Batten Disease Association approached me in 1995 and gave me funding so that I could self-publish my book, Forever Special Friends. To tell, the truth I've always been ashamed of this and have felt that I was somehow not a "real" author. I put in my profile that I was published but it felt like a lie. People from all over the world have sent me wonderful letters of appreciation for FSF all of which I have denigrated and discounted only because of the spectacles of shame that I have been peering through.

On Friday, Ross helped me throw away those lenses; I saw things in a new way and there will be no going back. I will proclaim off the roof tops and eventually a new website that Forever Special Friends is an amazing resource for families who are battling a disease that will take their children away from them. To think that we started out with a print run of 5,000 books and I have less than a thousand left. Within a few years I will be a best selling author! It may have taken me fifteen years to sell the first 4,200 books but I can guarantee the last 800 will fly off the shelves in comparison.

There are so many other things that I learned and have to work on but sharing them with you will have to wait for another posting. You can also look forward to some new announcements about my plans for my new author website and an up and coming entrepreneurial venture that I've been working on.

Cheers,

Salynne/Susan
©2009
(sorry no photos today--I cannot get them to upload-must be a problem with the site-will add later!)

Revelations....

Today is a big day--I'm revealing something that I have not done so before and that is why this blog is entitled Revelations; although it is in no way related to anything biblical. My original intent was to use the term Coming out of the Closet but that has too many other connotations as well.

As you know from my blogs I have indicated some things about myself such as the fact that I work at BC Children's Hospital, I had a daughter who died twelve years ago and I am a published author. Since I became involved with the Closet Writers group at C&W and since starting this blog most everything has been done under by pen name, Salynne.

The book that the Batten Disease Association published about my daughter lists my real name as author. Up until recently I have wanted to keep these parts of my life separate and my identity to others, except friends, private. Today when I visited the Facebook Page that I set up for the book I was delighted to see that there were over 200 "friends". I invited them to read Wilde Tide Blog as a way of following what is going on in my life now and I decided that also meant that it was time to introduce you to my published book "Forever Special Friends" and its website.

Forever Special Friends



© Salynne

Like a Fibre Gone From My Heart

My oldest daughter died in 1997 from a rare neurological disease. She was eight when she took her last breathe and now it is almost twelve years later. Yesterday she should've turned twenty and I should the mother of two living children and not just one. Children are not supposed to die before their parents.

It didn't even occur to me what day it was until late in the evening when I was sitting alone & reflecting on my day. My body remembered though, even if I didn't, and it explained why I was grouchy & not feeling well all day. Most years I've been fine. The hardest was when she would've been seventeen and I watched her friend graduating. It was such a reminder that life is not fair. Now this year, perhaps its the fact that she would no longer be a teenager but moving into adulthood, an adulthood that we will have to wait for her to have.

There will always be an ache, there will always be a hole in my heart and in my life. In one of my favorite books, the character Cadfael is asked the question, "will you miss her? Yes", he says, "like a fibre gone from my heart". I couldn't put it any better.

Salynne ©2009