"Coach to Cure MD: for Parent Project Muscular D\ystrophy

"Okay Clay Eagle And Whitmer Panther Fans!!!!"

We are set to have the 2012 Coach to Cure MD event again this year at Eagle Stadium.
It is Friday, Septemeber 28th. If you are interested in volunteering to help us out this year, please contact me. This is a great event that we were involved in last year for Parent Project Muscular Dystrophy. They are one of the leading forces out there to help find a cure for Duchenne. More details to come soon... For now, we are looking for donations for our raffles and help in getting the word out to the communities to make this year a HUGE success and one more step forward to finding a cure for our boys. 

Watch this video attached below to learn more on Coach to Cure MD.

http://www.youtube.com/watch?v=6XPvmYi43T4&feature=share&list=UU1YVq-XQ8FA3-ONbi7QScHg
                                                                        

ONE DAY, TWO TEAMS,

YOUR VOICE,

CURE DUCHENNE

PLEASE SUPPORT THE CLAY EAGLES IN

“COACH TO CURE MD”

GAME DAY: FRIDAY, SEPTEMBER 28th

GAME TIME: 7:00PM

 T-shirts, Arm Band Sales,

Raffle Items 

Coach To Cure MD is a partnership between the American Football Coaches Association (AFCA), a professional organization for over 10,000 college football coaches and staff, and Parent Project Muscular Dystrophy (PPMD), the largest national charity devoted exclusively to Duchenne muscular dystrophy.

In 2008 the AFCA adopted PPMD’s Coach To Cure MD program as one of their charity efforts. One reason the AFCA was drawn to Coach To Cure MD was because of the unique parallels between Duchenne, a disorder which robs young men of precious muscle strength and college football, a game where young men are at the peak of their muscle strength.

GOALS OF COACH FOR THE CURE ARE SIMPLE:

1.    Raise national awareness of the disorder

2.    Raise money to fund research for a cure

Learn more about Coach to Cure MD at http://coachtocuremd.org/

ABOUT PARENT PROJECT MUSCULAR DYSTROPHY

Parent Project Muscular Dystrophy (PPMD) is the largest nonprofit organization in the United States focused entirely on Duchenne muscular dystrophy.

Since 1994, PPMD has improved the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne through research, advocacy, education, and compassion. Because of our efforts, families affected by Duchenne have better access to state-of-the-art care information, research is moving forward at an accelerated pace, and legislation now exists funding Duchenne research and outreach programs.

We take a comprehensive approach in the fight against Duchenne—funding research, raising awareness, promoting advocacy, connecting the community, and broadening treatment options. Only this comprehensive approach will lead to the day that 100% of those diagnosed can turn to a treatment that will lead to the end of Duchenne muscular dystrophy.

Learn more at ParentProjectMD.org.



Lia Sophia for Braedans Bridge

Abby Teet and I are working for a FUN, EASY, and FASHIONABLE way to raise money to End Duchenne in honor of Braedan's Brdige.

I will be hosting a Lia Sophia showcase at my house Thursday September 20th at 6:00 pm. All profit from the party will be donated right to Braedan's Bridge. Thanks Abby Teet!!! Not only will you be able to get something stunning for yourself, but you will be helping incredible little boys as well!

For those of you who are not able to make it to the party, but would still like to support the cause,

here if how you can do it:

www.liasophia.com/abbyteet
click on browse jewelry
enter hostess: Tammy Henegar
and shop away!

There is also an incredible special as well, so feel free to SAVE money! :)
It is the PICK 6 SPECIAL: When you pick out 6 items, you can take ANY 4 of them and make the 50% off! So, be a smart shopper and make your highest priced items your half off items!!!

If you would like a personal catalog, please message me with your name, number, and address and I will get one in the mail to you asap!  E-mail is abbyteet11@yahoo.com, or find me on Facebook under Braedans Bridge.

LETS RAISE SOME MONEY LADIES and Cure Duchenne!!!!

Jett Riders roll in to visit

The Jett Riders, organized by The Jett Foundation ride across the country to raise awareness and funds for Duchenne Muscular Dystrophy.  In this years journey, we had the opportunity to host them at our house for lunch, cooling down in our pond and to just relax.  They swam, played King of the Raft, played baseball, and ate.  That evening we joined them in Sandusky for some fun at Goofy Golf, Putt Putting and Go-Karting. So much fun!!!!  They plan on coming back again next year and camping out for the night in our back yard. They hope to meet more families on our area as well.  Read the article below from our local press:

Cure Duchenne Family of the Month August

The Henegar Family Chelsea, Scott, Braedan and Tammy Henegar (left to right). In many ways Braedan Henegar, 6, is a typical first-grade boy. He loves the outdoors, animals and enjoys playing with his family’s four dogs. He is a Sprint Car Racing fan and enjoys going to the track to watch. Braedan is active and likes to swim, ride his bike and play t-ball. What isn’t so typical is that when Braedan turned 5 he was diagnosed with Duchenne. Now his parents have to balance his natural activeness with a new daily routine that involves living with the disease. “I want him to be able to be an active boy and experience everything boys like to do, but we always have to be aware of what he is doing and think about if he is being too harsh on his muscles,” said Tammy Henegar, Braedan’s mom. “It is a huge struggle to have the right balance.” Braedan’s routine has changed. It now includes daily stretches and physical and occupational therapy. The Henegar’s watch what Breadan eats and limit his salt and sugar intake. Rather than going to the neighborhood school he goes to a school that is 15 miles away because it is all on one level. Braedan knows that his muscles are different than other children. He tires out sooner and his muscles ache. He is starting to ask more questions. “Right now Braedan is doing really well,” said Henegar. “We will continue to stay up with the latest research and keep him as mobile as long as possible until there is a cure.” Henegar has been a big supporter of CureDuchenne and other Duchenne organizations. In April, she hosted a parent outreach session for more than 40 people in Perrysburg, Ohio. In July, Braedan participated in the Wooden Bat Tournament in Dayton that benefited CureDuchenne. Braedan is a huge Clay Matthews fan, even before finding out the connection with CureDuchenne. Matthews, a linebacker for the Green Bay Packers, is a CureDuchenne spokesperson. “Even though we are taking this journey through life that we never thought we would be traveling down, it is bitter sweet,” said Henegar. “We are having new experiences and are meeting wonderful people such as everyone at CureDuchenne, and all the other families we have met and became close too. We’ll continue to work tirelessly to help raise awareness and funds to find a cure.”

Brick City Blast Baseball Team with our Duchenne Boys Jack, Logan, Braedan and Diego.

We literally had a Blast with the Brick City Blast Baseball Team on Saturday, July 14th in Huber Heights, Ohio.  Chuck Doran has an amzaing group of boys that took the time out from the Tournament to play baseball with our boys.  This is a partnership between them and Cure Duchenne to help raise awareness and help them in their fight to find a cure to Duchenne.  See Cure Duchenne's article below on the event:

More than 60 baseball teams from around the Ohio tri-state region played in the 3rd annual “Strike Out Duchenne Wooden Bat Tournament” on July 12 through July 15 at the Brick City Sports Club fields in Dayton, Ohio, to raise awareness and funds to find a cure for Duchenne muscular dystrophy.
This tournament hosted a special Duchenne game on July 14 at 4:00 p.m. at the Action Sports Center so boys with Duchenne had the opportunity to play at their own level in a safe and supportive environment. The Brick City Blast players guided Duchenne boys no matter their ability or mobility.
“We believe every kid should have the chance to play baseball,” said Chuck Doran, president of Brick City Sports Club. “We understand that boys with Duchenne often enjoy baseball but can’t play the game because of weakening muscles so we wanted to provide an opportunity where they can participate based on their ability.”
Duchenne boys and the Brick City blast players played baseball inside on a regular baseball field.  Jack Wolf, Diego Guzman, Logan Behrend and Braedan Henegar participated in the event.  The boys had a great time and enjoyed a cookout and ice cream.  The boys received a Strikeout Duchenne t-shirt and a bat.
“Chuck Doran and the Brick City Blast Crew are an amazing group,” said Tammy Henegar, a Duchenne mom whose son Braedan played in the game. “We literally had a BLAST with them. I love that they offered this to our Duchenne boys and really took to heart what it meant for them to be able to play a sport that is at the hearts of most.  I know that my son did not want to stop playing that day.”
The “Strike Out Duchenne Wooden Bat Tournament” included 64 teams with baseball players ranging from age 8 to 16.  Proceeds of the tournament benefitted CureDuchenne.
Thanks, Chuck, for organizing the event and supporting CureDuchenne.  We look forward to seeing this tournament grow in the future.

Chuck and his team are already gearing up for next year to try to make it bigger for the kids.  He would like more families participating and more teams as well.  Expect next year to be HUGE!!!  Brian Wolfe and myself are working with Chuck to assist him in making some decisions.  If you have any suggestions, or know of any contacts... please contact me. 

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. 

“Join us for the 1^st Quarterly

Duchenne Family Support Meeting”

When:  Monday, June 25^th, 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.

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.

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 6^th, 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.

Contact us at braedansbridge@live.com