https://petitions.whitehouse.gov/petition/urge-fda-say-yes-accelerated-approval-safe-effective-therapies-children-duchenne/qtRww0rN

Katie, 

My email is niccole34@gmail.com  Number is 215-962-2395

Niccole

Katie--

I am so sorry you are going through this.  Call me whenever, I will be happy to speak with you.  My cell number is 302-438-7734.  We were diagnosed at AI, then followed at CHOP.  We now go to Kennedy Krieger in Baltimore and love it.  It is night and day with CHOP and much more cutting edge than Dr. Scavina.  My son, Jordan, will be 12 in a few weeks.  Your son is so young, there is great reason to be hopefull.  I will send you a friend request, as well.

Regina Reidenberg

Hi Katie,

Received your message in my inbox and just wanted to touch base with you and let you know you are not alone through any of this.  We live in Quakertown, Pa not too far from Pottstown and Michael is 7 years old with DMD.  He was diagnosed in 2008 and we have managed to muttle through this journey with a lot of perspective.  Not on this site too often More information on the FB pages.  If you are on Facebook  There are many support groups you can link up with that are checked more frequently.  If you need to talk or meet up to vent let me know and I will send you a private message with number.  

My son Lance has DMD.  For the last year we have been doing an experimental therapy.  Lance is the ONLY person in the country - probably the world - to be trying this therapy.  We are having what I feel is AMAZING results and I think now might be the time to share this good news so that you too might consider the therapy for your child.

First - I want you to know that I have no affiliation with this company at all.  We only looked into this therapy because my husband had a stroke and was using this photobiomodulation to help himself with recovery.  The company, called The Hope Institute, suggested we treat Lance to see what results we could establish and we decided we would.  After all, it is only light therapy and it CAN'T HURT A PERSON IN ANY WAY WHATSOEVER.

Here is the results after 10 months of therapy:

BEFORE THERAPY                     AFTER THERAPY

Standing - 10 seconds      Standing 50 seconds            

Blood Pressure - high        slightly elevated

Walking - 3 steps with assistance    walking 46 steps with assistance

heart rate - elevated controlled with medication   doctors considering removing medication

spine x ray - 10% curvature      NO curvature

attitude -  sometimes depressed / occasional crying jags  Lance is always happy

Now the doctors want us to get a gait trainer!  Yes!!!  That's right!  THE DOCTORS want to get Lance walking even more!! Now THAT'S progress!!!  I'm SO Excited!! 

The doctors are excited about Lance's progress too.  Can you believe it?  Yes, I said progress.  One doctor even said  "progress isn't a word we use with Duchenne patients, but in your case we can say it. That's astounding."

Now, let me tell you this… I am a mom who has a kid with DMD.  I know the hope we all hold out for our boys.  I also know how desperately we all want to grab onto any therapy.  I know we all need to find our own path and advocate for our sons.  That is why I have taken Lance to this therapy for a year and I have not shared this with you.  I wanted to make sure these results were real.  I do not want to give you false hope or false results.  

Gosh, I feel like I sound like a "too good to be true" infomercial.  I get that.  I know what it sounds like…but I am here to tell you that this is factual information and it is time to open this therapy up to all families who would like to see what this light therapy can do for your child.

Now, the Hope Institute in Easton Pa. ( located in Eastern Pa. about a 15 minute drive from New Jersey) is looking to try this therapy on some new patients to see if they can duplicate the results with others.  Yes, your child could be that person!  Even if it stops the progression of the disease, that's positive results!!  I know…it doesn't seem possible but I am here to testify that all you are reading above is true and accurate.  

Do you want to give this a try?  Remember, there is NO NEGATIVE SIDE EFFECTS!  It's only light therapy.  It's kind of like laying under a tanning bed 2 or 3 times a week, except you don't get tan! 

I don't know if The Hope Institute's web site has been updated as of yet, they used to be ATA Revitalization.  You can look them up through Google and see what they do.  Yes, treating DMD and having positive results was hoped for, but not expected.  

Call Toni Chicci, the owner, directly.  She is waiting to get your son or daughter under these lights to see what positive results we can document for you.  Just think!  If we can duplicate these results with other MD patients, THEN, we might change the direction of this disease for the world!  What an amazing blessing this would be.  I have hope that this might be

Hi Katie-I sent a message to the group last night, but I don't know if you can see it. Anyway....My name is Debbie and I live in Aston(Delaware County)and we also go to Dupont and see Dr Scavina. If you want to call me, my # is (610)494-8537. I'm sure you have many questions and are still in shock right now. My son is 16 and was diagnosed 11 years ago. We also see Dr. Mackenzie(Ortho) and Dr. Heinle(Pulmonolgy) If you are on facebook, I am Debbie Johnson Wagner.

PS-my brother lives in Pottstown,you aren't that far from me if you ever want to get together and chat. Have you joined the MDA?

I received your message as well.  My son Elijah is 9 and has DMD as well.  I live on the other side of the state from you, but if you need someone to talk to I'm here.  If you are on FB, you can add me as a friend.  I don't get on here much.  Amy Aikins

Dear Katie,

No words can express what you and your family are going through right now. All what I can say that Caleb is quite young and there is a big hope for a cure/ treatment for all the kids in his age group.

My son Adam is 16 years old. He was diagnosed with DMD when he was 7 years old. It was not easy then and still it is hard to seeing him getting weaker. But we have a good time and he’s never lost hope for the treatment.

Please feel free to contact me if you want to talk or get any information. We live in Moscow, PA. Our home phone is 570- 842 4195.

My best wishes during this holiday season.

Manal