Duchenne Muscular Dystrophy

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Hello all. Duchenne Muscular Dystrophy (DMD) is a disease which affects 1 in every 3600 boys. At age 12, on average, the boys are confined to wheelchair, and the life expectancy is 25 (you can learn more here en.wikipedia.org/wiki/Duchenne_muscular_dystrophy). Here’s the catch: there is a drug out there (called Eteplirsen) which cures DMD. There is no side affects right now, but it has not been passed by the FDA. It’s in Phase 2. Quite frankly, there needs to be accelerated approval or else it will take years for these children to receive the care they need. There is a meeting in Congress THIS FRIDAY to see whether the FDA can pass accelerated approval of this drug. Please, write your Congressman and tell them you would like them to attend the meeting Friday and to pass measures to provide accelerated approval of Eteplirsen. We ALL have a right to life. Like the cause of the unborn, we MUST protect those in society that do not have a voice.

Here is a form letter that you can send them.

Dear Congressman,
I am writing in regards to Duchenne Muscular Dystrophy (DMD) which is a disease which affects 1 in 3600 boys. I am requesting your attendance to the FDA meeting this Friday, February 7th, so that you can pass accelerated approval to Eteplirsen, which is a known cure for DMD which is in Phase II trial right now. Eteplirsen does not cause any side affects and is a known cure. We must not delay any longer in approving Eteplirsen, as these children affected by DMD need proper care now. We all have a right to life, and these children are our future. I kindly ask for your attendance this Friday, and for your discernment in this matter.

Sincerely,
 
Our Father, Who art in heaven,
Hallowed be Thy Name.
Thy Kingdom come.
Thy Will be done, on earth as it is in Heaven. Give us this day our daily bread.
And forgive us our trespasses,
as we forgive those who trespass against us.
And lead us not into temptation,
but deliver us from evil.

Amen.
 
ACanthony said:
Hello all. Duchenne Muscular Dystrophy (DMD) is a disease which affects 1 in every 3600 boys. At age 12, on average, the boys are confined to wheelchair, and the life expectancy is 25 (you can learn more here en.wikipedia.org/wiki/Duchenne_muscular_dystrophy). Here’s the catch: there is a drug out there (called Eteplirsen) which cures DMD. There is no side affects right now, but it has not been passed by the FDA. It’s in Phase 2. Quite frankly, there needs to be accelerated approval or else it will take years for these children to receive the care they need. There is a meeting in Congress THIS FRIDAY to see whether the FDA can pass accelerated approval of this drug. Please, write your Congressman and tell them you would like them to attend the meeting Friday and to pass measures to provide accelerated approval of Eteplirsen. We ALL have a right to life. Like the cause of the unborn, we MUST protect those in society that do not have a voice.

Here is a form letter that you can send them.

Dear Congressman,
I am writing in regards to Duchenne Muscular Dystrophy (DMD) which is a disease which affects 1 in 3600 boys. I am requesting your attendance to the FDA meeting this Friday, February 7th, so that you can pass accelerated approval to Eteplirsen, which is a known cure for DMD which is in Phase II trial right now. Eteplirsen does not cause any side affects and is a known cure. We must not delay any longer in approving Eteplirsen, as these children affected by DMD need proper care now. We all have a right to life, and these children are our future. I kindly ask for your attendance this Friday, and for your discernment in this matter.

Sincerely,
Click to expand...
Praying for your intentions & for all who suffer from DMD.
 
I sent a letter to my representative and senators - praying for all the kids who suffer from this cruel disease.
 
Thank you everyone. I am hoping the cure will be available sooner than later. I appreciate those that wrote letters. I know it will go a long way.
 
Lord, have mercy.
Christ, have mercy.
Lord, have mercy.

Saint Michael the Archangel,
defend us in battle.
Be our protection against the wickedness and snares of the devil.
May God rebuke him, we humbly pray;
and do Thou, O Prince of the Heavenly Host -
by the Divine Power of God -
cast into hell, satan and all the evil spirits,
who roam throughout the world seeking the ruin of souls.
Amen.

Our Father, Who art in heaven, hallowed be Thy name; Thy kingdom come; Thy will be done on earth as it is in heaven. Give us this day our daily bread; and forgive us our trespasses as we forgive those who trespass against us; and lead us not into temptation, but deliver us from evil. Amen.

Hail Mary, full of grace. The Lord is with thee. Blessed art thou amongst women, and blessed is the fruit of thy womb, Jesus. Holy Mary, Mother of God, pray for us sinners, now and at the hour of our death, Amen…

Sacred Heart of Jesus, have mercy on us.
Immaculate Heart of Mary, pray for us.
St. Jude, Patron of Causes despaired up, pray for us.
St. Joseph, pray for us.
 
Hello all. This is the form letter that the action committee would like for people to send. Feel free to update it to your liking. If you could send it to your Congressman and both Senators that would go a long way. Thank you. Also, please CC: DMDaction@gmail.com in your letter. Thanks to those that are praying.

SUBJECT: Please Attend Feb 7 Staff Briefing - Constituent request - Duchenne Muscular Dystrophy

Dear Senators and Congressman:

As your constituent, I am writing to ask that your health staff attend an important briefing this upcoming Friday, February 7, from 10:00am-11:00am in 334 Cannon House Office Building. The briefing will feature a preview of an upcoming documentary on the lives of boys who suffer from Duchenne Muscular Dystrophy (DMD). It will also include a brief presentation from a panel of renowned Duchenne researchers and scientists as well as DMD parents on opportunities to accelerate approval for the first-ever approved therapy for DMD using the tools Congress provided the FDA in the Food and Drug Administration Safety and Innovation Act (FDASIA), which was signed into law in 2012.

I am the friend of a boy with Duchenne Muscular Dystrophy, the leading genetic killer of children that affects about one out of every 3,500 boys born in the United States. Duchenne has a 100 percent fatality rate and there is no approved treatment. A boy diagnosed with DMD around the age of 5 is expected to experience a loss of muscle strength that leads to confinement to a wheelchair by adolescence and a short life assisted by ventilators. This progressive deterioration leads to death in the late teens or early twenties.

Congress granted the FDA special authorities to accelerate approval of promising treatments for diseases just like DMD that are rare, orphan and fatal. We face a pivotal moment where a decision could determine whether our child is part of the last generation to die from DMD or among the first generation to live.

I know there are many demands on your time and on your staff’s time, but I am hoping you will be able to make time for this briefing to help my friend and so many more boys who have no hope unless our government acts to advance promising therapies.

I ask that your staff please attend the briefing on Duchenne Muscular Dystrophy on February 7th from 10:00am-11:00am in 334 Cannon. Please let me know if you will be able to attend by responding to DMDaction@gmail.com.

Sincerely,
 
Remember, O most gracious Virgin Mary, that never was it known that anyone who fled to thy protection, implored thy help, or sought thy intercession, was left unaided.
Inspired by this confidence, I fly unto thee, O Virgin of virgins, my Mother. To thee do I come, before thee I stand, sinful and sorrowful. O Mother of the Word Incarnate, despise not my petitions, but in thy mercy, hear and answer me. Amen
 
Praying for your intention and for all those suffering from DMD.

O Blood and Water, which gushed forth from the Heart of Jesus as a fountain of Mercy for us, I trust in You!
 
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