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Team Rachel – Juvenile Batten Disease

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As a parent, we all pray that we will never have to say goodbye to our kids.  It is even hard to let them go to school and then when they get older, out with friends.  Letting them go is painful. I could not imagine knowing that I would lose my child for good and that it is only a matter of time. PLEASE DONATE HERE

For Kat von Tungeln, this is a reality. She has lived with this pain for three years.  When I found out about a race for this beautiful girl they were putting on in Hull, Massachusetts, I knew we all had to help.  The Backstage Beat has some of the best and most generous friends, and this is why I am telling you this story.

I asked Kat to tell me a little about Rachel and this disease that I had never even heard of.  Here is what she said:

Rachel is my 12-year-old daughter that was diagnosed in July 2009 with Juvenile Batten Disease: a fatal, neuro-degenerative disorder. This disease (in a nutshell) causes cell waste material to build up and kill healthy cells in the eyes, brain and central nervous system. Unfortunately, because there is so little funding and awareness, Batten Disease is a death sentence for all affected children. This disease comes directly from a DNA defect and is not contagious.

Rachel is blind and will lose her ability to talk, walk, remember, think and eventually, after becoming bedridden, our Rachel will die.  She is also affected by dementia, a condition usually afflicting the elderly.

It is our goal to help raise awareness and money for Batten Disease research so we can start treating this disease and eventually rescue these children (who were born NORMAL) from their fate.


 How did you come up with the idea for a race in Hull?

There is a Facebook group for Batten Families and several other families across the country hold Batten Disease Research Fundraisers by way of 5k, 10k etc.  It was an easy choice considering how beautiful our little seaside town of Hull, Massachusetts is.

 I am sure there are a lot of parents in your situation, not identical of course, but dealing with a situation that will take their child from them. What advice can you offer?
This is a really subjective answer because not every parent will handle a situation like I do.  Lots of kids have cancer and other scary, life-threatening illnesses but even with most of those, there is some hope that the child will survive and live a long life.  With Batten Disease, death is absolutely certain.  In some ways I think parents of kids with Batten Disease have it easier because there is no wasted energy on hope.  We know our kids are going to die a slow, miserable death and we have to do everything in our power and ability to make sure that children have the best, most memorable experiences as possible.  Don’t be afraid to call and ask for help from organizations like Make-A-Wish.  They provided my husband, Rachel and our 3 healthy children with a beautiful, memorable and once in a lifetime vacation.  These organizations are out there to make life more memorable and I am extremely grateful for that.

The only other advice I can offer is really something we can apply to everyone and every life.  Don’t be afraid to ask people for help.  If they are offering, accept it!  

What would you tell the parents out there that take for granted their kids?

You really can’t convince people not to take life for granted.  I remember when a friend of mine had a son who was really sick with cancer.  For a moment we can all remember to hug our children extra tight but the day-to-day reality of life is that we are all human and we all take our health for granted.  Try and remember we only live once and to make the most out of the time you have on this earth (for you and your kids).  Tomorrow may never come so don’t put off something you’ve been planning because you might never get the chance.

 Why is there so little research into this disease?
There is very little money into research of diseases that have little chance that a drug will come to market, especially when so few children will be cured or treated.  If there is a lack of an anticipated healthy profit margin, drug companies won’t both.  Even if there were more children with Batten Disease it is extremely difficult to convince the brain to accept medication or gene therapy that will successful and safely cross over the blood brain barrier.  

Whenever I tell people about Team Rachel and our fundraising efforts I always try to explain to them that research into Batten Disease will also help scientists and clinicians understand more about other brain based illnesses like Dementia, Alzheimer’s, MS, Parkinson’s, etc.  Its a true statement and there is a lot of evidence that we can learn a lot about diseases of the nervous system indirectly by investigation into other diseases (genetic or otherwise).

What is Rachel’s favorite thing to do?
EAT!  She can eat us all under the table.    She also likes to listen to music, play with her polydactyl kitten named “Mittens” (after the alley cat in the movie “Bolt”).  Because her disease causes dementia Rachel also finds great enjoyment with listening to movies that she was able to see (she went blind 3 years ago at age 9) when she was little.  She remembers what the characters look like and the plot.  She has a harder time these days with remembering the details in new movies so old movies tend to be her favorites.  She especially loves “Princess Diaries 1 & 2” and “Ice Princess.”

 What can we all do to help?
Spread the word about NORD (National Association for Rare Disorders) and about Rachel and Batten Disease.  Rachel’s website is www.teamrachel.com.

PLEASE DONATE HERE

 

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Partying for the Cause

This Saturday Sept 19th “Run For Cover” a Fundraiser for Second Chance Warming Shelter @ Beer Barrel in Marietta! A Day of MUSIC, Raffles, Adult Games and BBQ!

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A Day of MUSIC, Raffles, Adult Games, Award Winning BBQ PLUS your chance to “Give Back” by Supporting a Great Cause at one of the Best Dive Bars in Georgia!!!


Saturday, Sept 19th “Run For Cover”, a fundraiser will be held for the Second Chance Warming Shelter at Beer Barrel in Marietta. MUSIC provided by one of the Best Rock Cover Bands in The ATL No Sweat and that Award Winning BBQ brought to you by ANGELFIRE7 BBQ! Raffle items include 50/50 Drawings, Tattoos, family photo sessions, salon gift boxes, gift certificates, neon signs and a custom Harley Davidson smoker.

Custom Harley Smoker

Second Chance Warming Shelter is located at 271 Marietta Rd in Canton, GA inside Action Church. The Warming Shelter was started three years ago out of need because there is no Homeless Shelter in Cherokee County. When temps drop below 32 degrees, the City of Canton allows Action Church to open their doors to those in need. They feed them, give them a warm bed and provides Toiletries and Warm Clothing. Last year Action Church with the HELP of Fundraisers like “Run For Cover” was able to Shelter 350 men, women and children.

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LawJam 2015 Raises $35,000 for Atlanta Bar Foundation Grants Program

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Photo: Neal Patton
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LawJam 2015: Atlanta Lawyers Rock, Raise $35,000 for Atlanta Bar Foundation Grants Program

On Saturday, June 27th, local attorneys exchanged their suits and ties for jeans and guitars as the 6th Annual LawJam took place at Variety Playhouse.

The annual event pits attorneys against each other, but this time the music stated the case and music industry professionals were the judges. Seven Atlanta lawyer bands took part as LawJam 2015 raised money for Atlanta Bar Foundation causes.

The rocking lawyers competed for the title of Best Band and Best Original Song. After a night of music and dance, the Electric Bonfires were named Best Band. “Big Sleep Lies” by the Kevins was named Best Original Song and the band won a one day recording session at Tree Sound Studios.

The judges for the evening were Kaedy Kiely, of 97.1 The River radio; Josh Rifkind, Songs for Kids Foundation and Barry Selvedge of Prime Point Media as well as audience members. The Emcee and host of the evening’s festivities was Burt Reeves.

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Six Flags Over Georgia and MUST Ministries Host Opening Weekend Food Drive

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MUST Food Pantries distributes more than 370,000 pounds of food throughout the year; donations to directly benefit neighbors in need

Saturday, March 14 – Sunday, March 15

WHAT:
For the 5th consecutive year, MUST Ministries is partnering with Six Flags Over Georgia to host an Opening Weekend Food Drive on Saturday, March 14 and Sunday, March 15.

Each guest that donates six or more non-perishable food items will receive a Buy One Get One Free coupon for a general admission ticket to the park. Season Passholders that donate six or more non-perishable food items will be granted park access an hour before the park opens to experience the new BATMAN: The Ride BACKWARDS.

Suggested items to donate include canned meats, peanut butter, cereal bars, cereal and dry foods.

A full list of accepted items can be found online at www.mustministries.org/document.doc?id=49.

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