How does one even begin to describe the first time experience of attending a conference on Batten disease. Certainly, not being a parent of a child with Batten disease, I couldn’t even begin to acknowledge the feelings that are being experienced. But as a parent of 6 children, I can imagine the pain. Nothing is greater than the love you have for your child. Nothing and no one, not even Lance, could have prepared me for the experience I was about to have by attending the annual conference on Batten disease in Chicago this past July.

I came to this organization last October looking for a job, not expecting to find my next mission. It certainly didn’t take me long to realize that this was everything and more I could sink my teeth into to help others find answers, increase funding, generate awareness, and just let others know people are out there that can, and do, care about their struggles.

I have never met a more dedicated “family” of people fighting for the same result—a cure for this disease, in any form. It is truly a family. Everyone comes to the aid of others, rallies in support and encouragement, not just in the disease, but in everyday accomplishments and milestones. We laugh in the good times together, cry in the bad ones. This is a unique family. One I am glad to be a part of. My first experience at conference has cemented me to this organization, to these families, to those friends—all who are holding onto hope that a cure is on the horizon. Our prayer at BDSRA is to work ourselves out of a job. I couldn’t think of a bigger success than that one; one we would all gladly give.

Because I am not a parent, I do want to share with you some perspectives from other first time families who attended the conference. What an inspiration these parents are to each of us. Thank you to each one for sharing. Adina Ryan

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Adina,
Our experience was profound and surreal. We just lost Shiv in June and it was our first conference. We had been in touch with BDSRA for almost 5 years, but never wanted to leave Shiv nor take him. I also think in the back of my mind, it would be too difficult to see all the affected children back then and know that this was his fate. Being there last month was sad yet happy. We laughed and cried. We were all in it together. We made some valuable friendships and we felt Shiv's presence with us. It was also our first family vacation and we saw the city on Monday and returned on Tuesday. It was truly a unique experience and one we would surely go through again and again for the rest of our lives. We were so impressed at how well it was run. Thank you.

Suneeta Rana

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This year was my first experience it was a great one I finally opened up about my feelings. My soon to be stepson Austin Kirk was diagnosed with Battens last Sept. 2009 it was very hard to take I love these kids like there my own. The Sibs really helped me out, for some reason I could talk with them easier and understand where they were coming from. Also Mr. Jon Cooper really did a good job explaining to me about CLN 5 which is what Austin has. I really feel like I have a new family, and friends. Also Thanks to our Buddy Family they also made it easier on me where I didnt feel out of place. hope this helps you out thank you ma am.

Sonny Vaughn

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I am Nestor Sangroniz, father of Arene Sangroniz, a 5 five years old Spanish girl who suffers from the LINCL and whose brother, kepa, died of the same disease in October 2008 when he was almost 6 years old. I attended to the BDSRA Conference of Chicago and it has been a very hard vital experience but at the same time really positive for me. The treatment and attentions given by the organization have been outstanding, we have also achieved plenty of information and made valuable contacts.

In Europe and specially in Spain, almost nothing is being done for our children, we lack of research and there are few doctors who look after receiving information about the disease and treatments. I could notice that in the USA good progress has been made in this field, so by attending the conference we could learn a lot of things, above all concerning palliative treatments.

I would like to emphasize again, it has been a very exciting experience to spend some time with families who suffer our same problems and despite the idiomatic barriers, I could feel them really near. To see and to watch other children with my daughter’s same disease, and who reminded me of my dead son, was one of the most wonderful experiences I have ever lived. By including my son’s name in the memorial, although it was written in a simple card, I could notice that we are not alone and there are a lot of families like ours.

Finally, thank you very much for being there and for continuing fighting to give our children a chance.

Nestor Sangroniz

The Batten Disease Support & Research Association (BDSRA) will host their 22nd Annual Conference in Chicago July 29-August 1, 2010. Each year, BDSRA hosts a conference for families who have children with Batten disease including siblings, grandparents and the affected children.

Below is the 2010 conference press release

Read more in Adobe Acrobat(.pdf)

22nd Annual Batten Disease Support and Research Association
International Family Conference
"Field of Dreams and Hope"

July 29-August 1, 2010
Chicago Marriott Oak Brook Hotel
Oak Brook, IL

Included in this packet is everything you will need to know about the 2010 BDSRA Conference. Please know that many of the details are tentative. As we begin to finalize our plans, we will let our members know through our website (www.bdsra.org) and through our monthly News Flash e-newsletters.

This year's conference is co-hosted by the Midwest Chapter. These families, located in southern Wisconsin, western Indiana, and Illinois, have been working hard to make this a superb conference! We want to thank them for their hard work and dedication to BDSRA.

Read more in Adobe Acrobat(.pdf)

The Australian Chapter of the BDSRA presents the:
5th Australian Batten Disease Family Conference

When: Friday 8th October to Sunday 10th October 2010
Where: Sea World Resort & Water Park, Gold Coast, Queensland
Accommodation: Sea World Resort holds a group booking rate per attached booking form for attendees, further viewing of the venue at www.myfun.com.au

A Project of Hope.... The Chapter hopes that families, friends, doctors and researchers will came together in a wonderful and extraordinary way. Families travel from all states of Australia, parts of New Zealand and this year - perhaps even from the USA. Assistance (by application) can be given to families travelling from afar. The Project aims to provide families and their friends, teachers and medical staff, affected or involved by this Disease with information, education and social interaction in various aspects of Batten Disease.

** The conference duration is Saturday and Sunday but some families choose to stay extra eir own family holiday.
Together with our BDSRA USA group, we organise for worldwide researchers to come here to share their knowledge, updating us on research and possibilities and hopes of trial treatments. A number of excellent speakers will travel from Overseas and Australia-wide to give each of us a greater understanding of this disease.
The families, and carers from all fields, have a need for help in the form of knowledge, hope and practical ways of managing. Hence our second aim is having guest speakers who can form a panel group on the appropriate methods in which to provide the best care for these special children.
Included in the conference days are workshops for specific forms of Batten Disease and most importantly, a "Ladies" workshop (maybe a little champagne involved) and a "Mens Outing" (which also probably involves a beer !)

** Parents especially - In your planning, please ensure that you are available on Friday afternoon for an orientation between families and carers. ** Saturday night is a social dinner for all guests with entertainment for all.

** The Children's Program is operated during the conference period (Saturday and Sunday) with packed activities of fun as a way for the children to interact in the care of the Commonwealth Respite Centre for affected children and volunteer carers for the siblings.

** Sunday evening we hold a "Remembering Service" in a nice location.

1ST STEP: Please help us to make the best arrangements for you by:
** initiating your booking directly to the venue - complete the form attached and forward it to the venue by end-March 2010 (this is purely tentative at this stage and deposits can be refunded down the track if you cannot attend)
** email Vanessa at vanessa@battens.org.au to advise her that you will be coming, then we can liaise with you on the rest.
Please do this 1st step before the end of March (preferably) to ensure your inclusion in funding assistance opportunities. A lot of voluntary organising is undertaken to put this together.

Read more online (off-site link)

BDSRA 2010 Conference

Chicago, IL
Hosted by Midwest Chapter and National Office

Dates: July 29-August 1, 2010
Location: Chicago Marriott Oak Brook Hotel
1401 West 22nd Street
Oak Brook, IL 60523
Phone & Reservations: (630) 573-8555
Toll-free: (800) 228-9290
Conference Name: Batten Disease Association Conference
Room Rate: $95.00 per night plus tax

Meal prices will be available soon. The official Conference Packet will be available in early April both on the website and in the April Illuminator. As always, there is no registration fee. Stipends will be available on a first come, first serve basis beginning in April.

If you have any questions about the 2010 BDSRA Conference, please call the BDSRA office at (800) 448-4570. We hope to see you there!

Read more online (off-site link)

We also hold a Chapter Poster Contest in which each BDSRA Chapter is invited to create a poster for display at the Conference. A small anonymous panel judges each poster and the winning chapters are announced. The winners of this year�s Chapter Poster Contest were:

• 1) Ohio Chapter
• 2) Heart of America Chapter
• 3) Chapter

Congratulations to all of our winners and thank you to everyone for your hard work and fundraising throughout the year!

During Saturday night's banquet, we also awarded families, individuals, and chapters with fundraising awards. We award families in three different categories:

• a) Fundraising for Research
• b) Fundraising for Programs & Services
• c) Combined Chapter Fundraising

In the category of Fundraising for Research, the winners were:

• 1) Mike & Diane Carbrey -- $51,000
• 2) Eric & Christine Thelen -- $45,000
• 3) Joni & Pete Metcalf/MN Chapter -- $30,000

In the category of Fundraising for Programs & Services, the winners were:

• 1) Charlie & Wanda Leffler/Debbie Lowther -- $10,100
• 2) Lorie Williams -- $10,008
• 3) Joe & Kathy Allio -- $8,000

In the category of Combined Chapther Fundraising, the winning chapters were:

• 1) Chapter -- $116,000
• 2) Southeast Chapter -- $52,000
• 3) Heart of Amerca Chapter -- $51,000

During Saturday night's award banquet, BDSRA was honored to pass out research awards in the amount of $273,826! Those individuals who received the awards are as follows:

1. J Alfred Rider Memorial Research Award:

Shannon L MacAuley (Mark Sands, PhD) - Washington University in St. Louis --$40,000
"Activated Astrocytes as Therapuetic Targets in INCL" -This is also a BDSRA Postdoctoral Fellowship

2. Krystyna Wisniewski Memorial Research Award:

Su Xu (Peter Lobel, PhD) - Center for Advanced Medicine and Biotechnology/Rutgers University--$31,500
"Intrathecal Enzyme Replacement Therapy for LINCL" -This is also a BDSRA Predoctoral Studentship

3. Sandra Hofmann, MD , PhD - University of Texas Southwestern--$60,000
"Enzyme Replacement Therapy for Palmitoyl Protein Thioesterase Deficiency (INCL)" -The purpose of this study is to develop enzyme replacement therapy for Infantile Batten Disease

4. Anil B. Mukherjee, MD, PhD - NIH/NICHHD --$65,000
"The development of a treatment strategy for patients with INCL, caused by PPT1 nonsense mutations"

5. Martin L. Katz, PhD - University of Missouri --$37,326
"A Possible Canine Model for Infantile NCL Therapy Development"

6. Sunita Biswas, PhD - Massachusetts General Hospital , Boston --$40,000
"Generation of Human NCL iPS cells for study of NCL disease biology" -This is a BDSRA Postdoctoral Fellowship