PPMD Community

December 2008 Blog Posts (18)

When Brandon Entered My Life...

As most people know, I am Brandon's step-mom. I met Brandon when he was 5. His dad and I started doing some serious dating in January 2001. Brandon would come to my apartment and have a horrible time going up the stairs. By May, we were married, and by the end of June I had moved in with Brandon and his dad. Brandon was hyper and WILD! He run around and fell almost NON-STOP from the time he got up till the time he literally fell over to sleep. He had severe ADHD and some pretty MAJOR behavior… Continue

Added by MommaToo on December 29, 2008 at 9:42pm — 3 Comments

I'll follow the sun.

I called my mother the other day to clarify plans she had been making for a family get together. Unfortunately when my family makes plans they usually forget much of our circumstances and leave common sense out. So, to avoid the pitfalls I typically will intervene to ensure considerations have been made for accessibility or that we can fit the activity into our schedule.



I often wonder how much my family actually absorbs about life for Matthew and Patrick. Speaking with my mother… Continue

Added by Brian Denger on December 25, 2008 at 8:59am — 3 Comments

My Community Project - Coach to Cure MD

When Kimberly Galberaith first asked me to be the "Poster Boy" for a Community Project due to my involvement with Coach to Cure MD, I thought, "Community Project? Are you sure? Doesn't Coach To Cure MD better fit into another category or something?"



But as I thought about it, it couldn't make better sense. She was right again, as usual. Some of you may be familiar with the event, but for you others who don't know about it let me give you a little background. Thanks to a lot of work… Continue

Added by James Poysky on December 22, 2008 at 2:01pm — 1 Comment

Busy Times

We have a busy few days ahead of us. Doctors appointments for Charlie and for me, plus school and Christmas stuff. I’m sure my schedule is no different than most of yours this time of year! But I wanted to take a second to let you know, if you don’t already, about my personal “parent project” for 2009.



After being so moved by this summer’s conference, I am helping PPMD raise money to support other educational workshops on topics such as Endocrine and growth issues. For me it is a… Continue

Added by Jennifer Driscoll on December 20, 2008 at 10:06am — 1 Comment

fundraising,

Hi,every body since we find out about our son with DMD in last august,we been devastated about the news ,.We wanted to know every little information about this desease,wich We didn't get much from the first neurologist.

After our first meeting with ppmd at fort lee,nj We been very happy with the parents and the staff of ppmd,they're wonderfull,since that day I been thinking about a way how to raise money for our kids,I did talk to many people to help me raise money,wich I start at marina… Continue

Added by djamel fathi on December 19, 2008 at 10:50pm — No Comments

Fundraising efforts.

PPMD community members
I have a great fundraising idea that would require the use of pictures of our boys. Would families be interested in submitting a few photos of their hero/heros for a one time use? The pics would be deleted afterwords and all fundraising efforts would go directly to a chosen PPMD research inititive. Can you please respond through the PPMD community site if interested.

Thank-you

Steve Beaulieu

Added by Steve Beaulieu on December 18, 2008 at 2:41pm — 10 Comments

Advocacy Project

The very first thing our family did with PPMD was go to Washington DC in February 2001. It was 4 months after Michael was diagnosed with DMD. We were still in somewhat of a shocked phase not knowing what to do or where to turn. Wow, what a trip! There was virtually no federal funding for DMD research but the MD Care Act was just introduced and we were there with about 75 others to make our case. It was such an empowering feeling to be able to do SOMETHING. It filled us with hope. There are… Continue

Added by Suzanne Gaglianone on December 17, 2008 at 11:00pm — 2 Comments


Staff
Birthday thoughts

I'm 62 today. Yikes. When my mother celebrated her 62nd. birthday, I thought she was old, finished, worn out... Now that I'm 62, the world looks very different and I get pretty grumpy if someone suggests I'm old. I tried to resolve the issue by asking a few people for their thoughts:

I met my cousin Ruth last week. She is the same age and explained thaht 60 is the new 50, take off some years for craziness and it recalculates to around 45ish. I like the idea but in some ways, it simply… Continue

Added by Pat Furlong on December 16, 2008 at 6:49am — 24 Comments

IEP's Its hard to hear the bad news

i have 3 boys with DMD, I just recently went to my 6 year old sons IEP. It is hard to sit through it. Not only is my son affected with DMD he has major learning disibilities. I felt like a target in the room they sat and told me all the things that he couldnt do it was devestating.They are pulling him out of regular kindergarden and putting him in a self contained classroom. I met with the school phychiatrist, teacher, ot/pt and principle. I felt so alone in there about five minuets into the… Continue

Added by Teresa on December 15, 2008 at 7:34pm — 6 Comments

During this season of holidays, I wanted to pass along an incredible story. I was able to talk to a nurse that cares for a set of twins that have DMD. They are 51!!!!! They have alot of support with …

During this season of holidays, I wanted to pass along an incredible story. I was able to talk to a nurse that cares for a set of twins that have DMD. They are 51!!!!! They have alot of support with medical equipment but are mobile....In fact, they coach teams, go to university games and are out and about quite often! Their quality of life is good. At first I thought that they were BMD but was told that they lost ambulation @ age 8 which certainly would be more consistent with DMD. No steroids… Continue

Added by Char Burke on December 14, 2008 at 11:47am — 1 Comment

Petition for Deflazacort FDA approval

I found this while searching the web for information on Deflazacort. I wanted to post the link to this petition here so that others may sign it and send it along to anyone you know so we can really make this a HUGE drive. I am currently trying to contact the originator of the petition and so far have not had any luck. I will pick up where he left off if I cannot track him down. Everyone, please have a look at what Adam wrote and then sign it if you feel comfortable. I was number 124 and by… Continue

Added by Laurie Botwin on December 12, 2008 at 1:24pm — 2 Comments

The Biggest Rip Off Of All

December 11, 2008

I have two sons with Duchenne Muscular Dystrophy; age 27 and 29 both have lived past their life expectancy of late teens to early twenties. Both require constant care and assistance with all daily life activities. That being said both are wonderful bright young men with outgoing personalities and great attitudes.

Both of my young men need durable medical equipment for a variety of reasons, for now I’d like to talk about David and what I’ve just discovered about DME… Continue

Added by Vickie Lee Beard on December 12, 2008 at 11:23am — 7 Comments

Learning

Tomorrow is Ben's first neuromuscular clinic appointment. I made a list of questions to ask this doctor. Funny thing is, I don't expect any answers. We have been told that our local hospital is not the place to seek care. We couldn't get an appointment for the better place until April and won't go to Cincinnati until March. I feel like PPMD has been my "clinic". I have learned so much here. I have learned that I need to be the vocal minority to ensure Ben gets what he needs. I have learned that… Continue

Added by Laurie Botwin on December 10, 2008 at 4:25am — 3 Comments

Home Care for DMD guys

Hello to All,



I am trying to establish a home and respite for DMD guys and their families. My home is accessible and I could, if need be tomorrow, allow 2 guys to move in full time. Since my 2 sons are 27 and 29 we are pretty established in our routine and have the capacity to help others do the same. I know there are a few guys in Maryland in nursing homes; one of my first goals would be to reach out to these fellows and offer them a home life. Next, guys in the community,… Continue

Added by Vickie Lee Beard on December 8, 2008 at 4:09pm — No Comments


Staff
Santhera - Expert Roundtable

On Wednesday, Dec. 3 I was invited to participate in an Expert Roundtable meeting with Santhera, discussing Idebenone. Idebenone is a synthetic CoQ10 and suggested to provide cardiac benefit. It is available via the internet. Santhera's goal is to perform clinical trials in an attempt to have Idebenone approved as a therapy. While it is by no means a magic wand, it is potentially one element in the 'DMD cocktail' for treatment.



We discussed a range of issues from evidence based… Continue

Added by Pat Furlong on December 8, 2008 at 1:15am — 4 Comments


Staff
We cannot let the economy slow our progress.

I think we are all terrified by the economic news. Terrified for our own families but it is more than that.. the economy can slow our progress to endDuchenne.



Today we know more about care than ever before. Research is moving rapidly ... and it is on a certain level. I know it doesn't feel that way when you tuck your son into bed at night and pray for trials, treatment, cure. In 2009 we will see many more clinical trials - antisense, approved drugs, idebenone and others. We are in a… Continue

Added by Pat Furlong on December 8, 2008 at 1:02am — 2 Comments

Caught of guard - Questions by Strangers

I guess I was not really ready for this. Today I had a stranger approach me and question why I parked in between 2 handicapped parking spaces during school dismissal. I told her that I can do it. (I am thankful to the school for their understanding and offering me that space to be used.) She did not stop there, she explained to me who can use those spaces and that I should not be using. I told her that I have permission from the school to use that space. That did not satisfy her; she continued… Continue

Added by Bains on December 5, 2008 at 10:11pm — 6 Comments

Just another day in Duchenneville.

So, just as you think things are going okay, something happens to throw things off kilter. Just a normal evening turned into one very apologetic big sister and a trip to the emergnecy room ending with a foot in a cast. It seems Ryan and his big sister, Sarah were playing together. They were holding hands and spinning around until Ryan fell and banged his foot on the coffee table. I tried to soothe him, but to no avail. Because Ryan does not speak, we have to use trial and error to figure out… Continue

Added by Jennifer Collier on December 2, 2008 at 3:30pm — 2 Comments

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