Friday, May 18, 2012

Be sure to visit our Duchenne Muscular Dystrophy Awareness Table for Braedans Bridge at the Oregon Festival in Oregon, Ohio on Dustin Road on Sunday, May 20th.  We will be set up in front of Dunn Chevrolet, where you can enter for a chance to win a Family 4 pack of Mud Hens Tickets!!! 
We wll be there until 6pm, rain or shine but it looks like it is going to be a BEAUTIFUL day. 





Tuesday, May 15, 2012

“Join us for the 1st Quarterly
Duchenne Family Support Meeting”

When:  Monday, June 25th, 2012
Time: 6pm-8pm
Where:  Way Public Library
101 E. Indiana Avenue, Perrysburg, OH 43551
RSVP: REGRETS only to thenegar2000@hotmail.com or 419-260-2687
We hope that you can join us for discussions, event planning, and getting to know friends.
Refreshments will be provided courtesy of the MDA.

Monday, May 7, 2012


Thanks everyone so much for joining in our 2nd Mom to Mom Sale yesterday! We had a tremendous turn out, and made some great connections as well. I hope that everyone had a great time, whether you were a seller, vendor, or shopper. Also, thanks to all that helped make it such a great succes. Thank you to everyone that dontated an item to the raffle and some of you continue to support us every ev...ent and we want you to know how appreciative we really are for your continued support. To all my bakers out there that helped in our bake sale, which was a big and tasty hit. You all really out did your self! Thank you to our friends and family for supporting us and helping out to make it all go so smoothly. And most importantly thank you to everyone to continuely support our efforts to spread awareness and raise funds for Duchenne Research. We were able to raise $926.00 at this sale for our fund to "Build our Bridge to End Duchenne."
P.S. If anyone is interested in the next Sale or when we are having it please contact Heather Damask, Abby Teet or myelf and we will put you in our contact data base for the future.

Tuesday, May 1, 2012


A great explanation of telling your kids about their friend that
has Duchenne.

Going to School with Duchenne Muscular Dystrophy
                     By Lisa Littleton
Hey readers!  Our names are Andrew and Reece and we are two brothers living with Duchenne Muscular Dystrophy.    Andrew is nine and loves to play video games.  Reece is seven and enjoys building with Legos.  We are kids just like you but we are also boys living with Duchenne Muscular Dystrophy.  Duchenne affects mainly boys.  Having Duchenne means our muscles do not make dystrophin like most people’s bodies make to keep muscles working as they should.  Since our muscles work differently than other kids, we move slower than other boys our age.
Everyone has muscles but not everyone gets Duchenne.
You might be wondering how I got Duchenne.  Well, it is not something you catch from germs like a cold.  It is just something you are born with, like needing to wear glasses.  I did not do anything wrong and it is nobody’s fault.   Since Duchenne does not come from germs, there is no way for my friends to get it from me.
I cannot give you Duchenne Muscular Dystrophy.
Duchenne means my body does not make the dystrophin my muscles need.  Dystrophin is one of our muscle proteins that keep muscles strong.   The best thing I can do to help my muscles is to do an exercise program of daily stretches to keep fit.  These stretches are very important because they keep my muscles from getting tight.  When muscles are tight, they do not move as well, and it makes it harder to walk, run, climb, and play.  The stretches do not hurt too much and I can even do some by myself.
Doing stretches is just part of my routine like eating lunch or brushing my teeth.
Because I have Duchenne, I take medicine to keep my bones strong.  Sometimes when you take medicine you get something called side effects.  Just like you might take medicine for a cold, and even though it makes you feel better, it also makes you sleepy.  One side effect of my medicine is gaining extra weight even though I am not eating too much food or food with a lot of sugar and fat in it.
You will notice me eating healthy foods for snack and lunch.
Another side effect of my medicine is that I do not grow as much as other children our age.  Boys with Duchenne move their muscles better when they are short.  I do not like this side effect at all so you can really help me by not teasing me about my height.
Boys with Duchenne are shorter than other boys their age.
My medicine can also cause me to feel angry and grumpy sometimes.  So I may act differently than I normally do sometimes.  When I act this way I just need to take a rest for a little while.  Then I get back to being myself.
Sometimes I need to take a break to feel better.
When you have Duchenne you get tired easily.  You cannot move as fast as other boys.  It feels like having two five pound bags of sugar on your legs each day when you are like me.
Sometimes I need to take a rest because my legs are tired.
I use rolling backpacks for school because this is better for my muscles.  I also avoid using stairs and jumping on trampolines.  These things are not good for my muscles.  That’s why my parents built us a house without many stairs.
I do not use stairs unless I have to and I do not jump on trampolines.
Sports are something I love to watch and play.  The best sport for my muscles is swimming so I try to get in the pool as much as I can.  My muscles do not get as tired in the pool.  I have to be careful because even though the right amount of exercise is good for my muscles, too much is bad for them.
Swimming is the best exercise for my muscles.
Like most kids, I like to play outside at recess and take part in PE class.  I cannot run as fast as most kids but I can walk until I get tired.  Sometimes I need to play games like tag differently.  Tag is more fun for me if everyone walks instead of runs.
Duchenne Muscular Dystrophy does not stop me from doing most anything other kids do.   You may see an adult, like an aide or a physical therapist, join me in PE class to help my muscles stay strong and learn how to play games in a way that is safe for me.   I may do something a little differently than you in PE because of my muscles and there may be things I’m not able to do but I still like to feel included.
My condition causes me to break my bones more easily than you do.    One time, Andrew got tackled by accident and broke his elbow.  The neighbor felt really bad and apologized.  His Mom felt bad too and also called to apologize.  It really was an accident so we are all still friends.  We just have to be more careful than you might need to be when we play.
Now our Mom says we can’t play tackle football anymore.  But we do like flag football!
I hope that someday there will be a cure for Duchenne.  A cure is when doctors are able to end Duchenne from happening to boys.  Right now, many important people called researchers are working hard to find a cure each day.  Until then, my family and friends continue to raise money for the research that will find the cure.  Please do not treat me differently because I have Duchenne Muscular Dystrophy.  I am a kid just like you except that my muscles work differently than yours.
I am just a boy with Duchenne but a lot like you in every other way.

Kid’s Quiz on Duchenne Muscular Dystrophy

1.    What is dystrophin?
2.   What part of my body works differently than yours?
3.   What is a side effect?
4.   Can we catch Duchenne from others?
5.   Since my muscles work differently than yours, what do I have to do each day?
6.    Do stretches hurt?
7.   What type of food should all people eat?
8.   What are some things I should not do?
9.   What is the best type of exercise for boys with Duchenne MD?
10.   What is the best way for me to play tag?

Answers to Kid’s Quiz
1.    Something our bodies make to keep muscles working as they are supposed to.  Boys with Duchenne have bodies that do not produce dystrophin.
2.   Our muscles
3.   Side effects are other things that happen to your body because of having to take medicine.
4.   No
5.   Stretches
6.   No
7.   Healthy Foods
8.   Stairs and trampolines
9.   Swimming
10.    It is better for us to play tag by walking instead of running.



Information on Duchenne Muscular Dystrophy

When you think of Muscular Dystrophy, you probably refer to Jerry’s Kids or the Jerry Lewis Telethon.  That is the only relation we had to it also until, the day that Muscular Dystrophy rocked our world.  Our son, was only 5 years old, and seemingly remarkably healthy.  The only concern that we were having was that he was a toe walker, and as he was growing he was starting to seem a little more clumbsy.  Little did we know, we were about to embark on an adventure that no parent wants to have to travel.  Our son, was diagnosed with Duchenne Muscular Dystrophy.
Duchenne Muscular Dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.

Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties.
Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation. In other words, it can affect anyone. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.

What Causes Duchenne?

One of our largest known genes, dystrophin is an important muscle protein that acts as a kind of glue, holding muscles together by maintaining the structure of muscle cells.
Dystrophin is also believed to carry signals between the inside and outside of muscle fibers. Without dystrophin, muscles are unable to operate properly, and eventually suffer progressive damage.
The dystrophin gene is carried on the X-chromosome. Boys have only one X-chromosome, making them more susceptible to dystrophin damage, as they lack a second X-chromosome to make up for the damaged gene.
When a boy’s body is not able to produce any dystrophin at all, he is diagnosed with Duchenne. In Becker muscular dystrophy, a shortened form of dystrophin is generated.
Duchenne is usually passed from parent to child, but many cases are the result of random spontaneous genetic mutations, which can occur during any pregnancy.
In fact, about one out of every three cases occurs in families with no previous history of Duchenne.

Who Gets Duchenne?

Duchenne  is not specific to any one group, crossing all cultures and races. What sets this disorder apart from other muscular dystrophies is that it occurs almost exclusively in young men, making it a gender-linked disorder

Why Boys?

The dystrophin gene is carried on the X-chromosome. Young men have one each of the X- and Y-chromosomes, whereas girls have two X-chromosomes. Young men are therefore at greater risk of inheriting disorders caused by damaged genes on the X-chromosome, since they lack a second X-chromosome to “make up” for the damaged gene.

How Duchenne is Identified

Newborn screening is able to detect Duchenne muscular dystrophy, but there are still many issues that need to be considered by the National Institutes of
Health (NIH) before widespread newborn screening will be available.

Observation

Parents or teachers are often the first to notice the early signs of Duchenne, such as speech delay, enlarged calf muscles, and the inability to keep up with peers.

Tests/screens

There are reliable tests to help doctors diagnose a boy with Duchenne. The following tests are typically used to confirm a preliminary diagnosis of Duchenne:
  • Creatine Kinase: Creatine phosphate kinase (also known as CPK or CK) is an enzyme that normally lives inside muscles. Boys with Duchenne often have CK levels 10 to 100 times the normal range. Elevated CK levels indicate muscle damage, although a high CK does not confirm a diagnosis of Duchenne.
  • Genetic Testing: (using blood cells or muscle cells) is the best way to obtain exact genetic information for a conclusive Duchenne diagnosis. The field of genetic testing is rapidly evolving, and there are several types of testing that provide accurate genetic diagnosis.
Early Phase
Physical symptoms
  • The boy will typically move slower or with more difficulty than other children his age.
  • He may appear clumsy and fall frequently, and have difficulty climbing, jumping, or running.
  • Because of his muscle weakness, he will become tired more easily, or will have low energy.
  • He may ask to be carried frequently, or need the use of a stroller for longer distances.
  • Some of his muscles (in particular his calves) may appear enlarged or overdeveloped. This happens because muscle cells are being replaced by scar tissue.
  • This process may also result in him being less flexible and having loss of elasticity in the joints (also known as contractures).
Braedan’s Bridge will invest in research that will impact every boy touched by Duchenne, no matter his age, stage of progression, or mutation.  We will continue to raise awareness and funds until there is a cure and our boys are safe from this awful disorder.  Thank you.

Information gathered for this flyer from Parent Project Muscular Dystrophy.

2nd Annual Mom to Mom Sale to End Duchenne

End Duchenne-Mom to Mom Sale
Children’s clothing, toy and equipment Sale


Please join us for another Mom to Mom Sale!
There will be lots of tables filled with gently used clothes, toys, equipment, etc. for children of all ages!  
There will also be several raffle items up for grabs, with tickets only $1 each and a Bake Sale as well.

Date: Sunday May 6th, 2012
Time: 11:00am – 3:00pm
Location: Bayside Boardwalk
2759 Seaman Road, Oregon, OH 43616

 Entry fee: is $1 donation for adults, children are FREE! Admission also gets you a free raffle ticket!

All profit will be given to the charity Braedan's Bridge in support of
Duchenne Muscular Dystrophy.
Duchenne is the most common, aggressive and lethal form of MD that effects 1 in every 3,500 boys today. There is no cure.

(We will also be accepting donations of clothing, toys, equipment as well.)

Contact Heather Damask @ heatherdamask@gmail.com
 if you have any questions at 567-277-5568.

Braedans Bridge


"Braedans Bridge"

Help us build a bridge to End Duchenne Muscular Dystrophy.

Braedan is so full of life.
No one would ever know that his muscles are slowly wasting away.
While there has been progress fighting Duchenne Muscular Dystrophy (DMD), a cure is still so far away.
Please continue to give our boys a chance for a lifetime


When Duchenne became a part of our life:
We live in Lucas County, Ohio. The sweet little boy that you see here is our son, Braedan is six years old, and all boy through-in-through. He loves being outside, getting dirty and playing with trucks and cars. He is so full of life that one would never know that his muscles are slowly wasting away every day. You see, when Braedan was born everything appeared normal. But as he started walking we noticed that he had a tendency to walk on his tip-toes. As he got older he became clumsy. We still were not all too concerned as children often outgrow such stages. Little did we know we were about to embark on a journey that no parent would ever want to experience. Our son was diagnosed with Duchenne Muscular Dystrophy (DMD).
Our reaction to the news:
When we received this diagnoses, we had no idea what DMD was. The only association that we had with Muscular Dystrophy at all was The Jerry Lewis Telethon. The prognosis was devastating. We were told that DMD genetically runs in families, however, there is no trace of it in our family. This is one of the horrific realities of this disease. DMD can happen to any baby boy, anywhere in the world and at anytime. 40% of Duchenne cases are spontaneous as is the case with us.
Duchenne’s cruel prognosis:
We also learned that DMD occurs in one out of every 3,500 male births worldwide. It is the most common, aggressive and lethal form of Muscular Dystrophy. It is the leading genetically transmitted killer of children. There are no survivors.
Boys like Braedan are in wheelchairs during the middle school years and become quadriplegic in their late teens. All muscles in the body, including the heart and lungs, literally waste away irreversibly. Their life span is shortened to only two to three decades.
Why we need help from you: 
The Duchenne community needs your help to spread awareness of this disease.  We need your help with involvement in donating when you are able.  Research has come a long way over the years, but we are still so far away from a cure. And a cure can not come soon enough for us.  We cannot afford to lose momentum for time is of essence. Please support Braedan and boys like him by backing our requests for help. Please continue to give our boys a chance for a lifetime. 

Thank you,

Scott and Tammy Henegar
Braedans Bridge Inc.