PPMD Community

November 2008 Blog Posts (23)

Wil's dream of attending a Bama game came true....

It is amazing how families connect and reunite during times of need. Please view the link to read a beautiful article about my son and our visit to my alma mater, The University of Alabama.

www.tuscaloosanews.com/article/20081116/NEWS/811150299

Added by Tiffany Cook on November 30, 2008 at 9:48pm — 1 Comment

Here there and everywhere.

This week Matthew was invited to a party by a girl in his youth group. Alice and I know the family fairly well, yet we haven't been to their home and didn't know how Matthew would get inside with his wheelchair. Fortunately they called to let Alice know they were borrowing a ramp. This was a good sign. The evening of the party I offered to drive Matthew just to be certain he was able to get inside, make sure he was comfortable and let the family know about his needs based on what the other kids… Continue

Added by Brian Denger on November 29, 2008 at 9:44pm — 5 Comments

clothing

I am desperately looking for a pair of shoes for my 22 year old son with DMD. His foot drop is really bad with his little toe curling underneath his foot. Any advice?

Added by Carol Keskeny on November 28, 2008 at 9:59am — No Comments

Thankful

Dear Pat,

How sweet to thank us. I am so thankful that we have you and PPMD organization. So much progress has been made. I am so amazed that now we have the NIH looking at muscle diseases and was appalled that they had not done so until PPMD came along. We have met so many other families dealing with this disease and I love sharing with them and hearing their stories about their sons. What a neat group of people!!!! Keep up the good work. And I am so thankful for our daughter and her… Continue

Added by Joyce Carpenter on November 28, 2008 at 9:30am — No Comments

I'm so very thankful for my whole family! I'm thrilled to wake up every day to see Cole's and Jack's smiles and hear their stories and songs! I have the best, most supportive mother who does everythi…

I'm so very thankful for my whole family! I'm thrilled to wake up every day to see Cole's and Jack's smiles and hear their stories and songs! I have the best, most supportive mother who does everything for my sons. I'm most appreciative of the wonderful parents of my students who set up a foundation for my boys in addition to all the support my sister-in-law had started. And I'm thankful for all the wonderful people who put their time and effort into PPMD to help our boys. God bless you all! Continue

Added by Lisa on November 27, 2008 at 11:33pm — No Comments

Thanksgiving

I am thankful for so many things. I am most thankful for the strength I have.....the strength I have that somehow doesn't allow DMD rob me or my family of our most important power......JOY. We are thankful for joy. It is totally up to us wether we choose to feel it or not. We get that. I often lay in my bed and list the things I'm grateful for....my family, my house, my breathe, my today....but we all know...all that is useless without JOY.

XO May this be our best year yet. Full of…

Added by Jill Castle on November 26, 2008 at 11:28pm — No Comments

I am thankful for.....

I am thankful for organizations like PMD that give our family such hope. My grandson Seph Ware is one of the boys that you work so tirelessly for. Also thankful for God's grace that gets us through each day as we live with this horror of a disease. Connie Watkins

Added by connie watkins on November 26, 2008 at 4:59pm — No Comments

Staff Giving Thanks to You

This time of year, all of us at Parent Project Muscular Dystrophy like to take a moment to look back, reflect, and give thanks. And as a member of our inner circle, you’re vital to our work.

I’m thankful to you, for the part you play in our vibrant PPMD community, and for taking such an active role in our accomplishments this year:

Research — We’ve seen promising therapies make it further into the clinical trials pipeline, including Duchenne’s first-ever Phase 2b clinical… Continue

Added by Pat Furlong on November 26, 2008 at 11:30am — 37 Comments

Thanksgiving feast

It's the day before Thanksgiving. The house needs to be clean-especially the kitchen (LOL) and the little Turkey roast we got needs to be defrosted. Groceries needs to be put on shelves and my temptation to the eat the pumpkin pie now needs to vanish so I have it to enjoy tommarrow.

Tim has a 8 page essay that needs to be written before the 4th and an anime presentation for his Japaneese class. So we gave up the idea of going to Orlando so that these things can (and WILL!!) get done.… Continue

Added by Dee on November 26, 2008 at 11:00am — No Comments

Being a Pioneer

The past two months have been difficult for me. We have started the PTC 124 extension trial. We have waited for baited breath for the last two years to start this trial.

My son, who is more than willing to try any therapy if he thinks it will help, balked at the plan. I came home from work late one night to find my son in a state of total melt down. Yes, at 15 we have melt downs. For the past two months it has been a struggle to gag down the vanilla flavored drug. Given his age and… Continue

Added by Christine Piacentino on November 22, 2008 at 8:58pm — 3 Comments

Newspaper Article about the Piacentino Family

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By Mike Costanza, correspondent

Penfield Post

Posted Nov 04, 2008 @ 07:05 PM

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Penfield, N.Y. — Christine Piacentino remembers Dec. 31, 1997. That was the day she and her husband, Michael, learned their 4-year-old son, Jonathan, had Duchenne muscular dystrophy.

The news hit the Penfield couple… Continue

Added by Christine Piacentino on November 22, 2008 at 8:10am — No Comments

media inquiry

For an article in Kids on Wheels magazine, I'm looking for kids with disabilities (especially wheelchair-users, ages 8-12) and their parents for a series of articles called "Children and the Online World."

My aim is to collect advice and anecdotes from parents and kids about the role the Internet plays in kids' lives today. What are its good and bad uses? How important is the online world for school and social life (making and communicating with friends)? How do parents monitor kids'… Continue

Added by Ben Mattlin on November 19, 2008 at 1:15pm — No Comments

Fixing a hole

As people and especially as parents we all carry baggage that we dredge up from time to time when we need a good dose of humility. It could be from when we were children or something later in life. Being a parent of a child or children who have a chronic illness only adds another dimension when these situations involve the child. A situation that may go unnoticed under other circumstances takes on a different meaning to us. As much as I’ve tried to remember we all make mistakes one such… Continue

Added by Brian Denger on November 15, 2008 at 9:13pm — 2 Comments

advocacy for our sons

we need to unite as parents here in florida to change the actual laws concerning med-waiver qualificatons since its very hard for young adults with dmd and their families to get the help they need in the most critical stages of these condition .some of us parents in order to keep our sons home we provide 24/7 caregiving while the other parent have to work all the time to provide for the needs of the family leaving little or no time to help. we need more help from our state since they have… Continue

Added by vilma rodriguez on November 12, 2008 at 9:58am — No Comments

Staff International Collaboration - UPPMD

Amsterdam: November 9, 2008 –

United Parent Projects Muscular Dystrophy –an international collaboration focused on Duchenne muscular dystrophy.

On Sunday, November 9, UPPMD members met in Amsterdam. Members present included representatives from Italy, Germany, Ireland, Switzerland, the Netherlands, Spain, UK and the US. It was exactly the right time.

A little history: Parent Project Muscular Dystrophy (PPMD) was incorporated in April, 1994. Elizabeth Vroom,… Continue

Added by Pat Furlong on November 11, 2008 at 7:21pm — 1 Comment

Needing parents help in designing toys

Hello everyone!

My name is Liz Hardy, and I’m an Industrial design student from Colorado. I’m in the process of designing a ride on toy that accommodates the needs of physically disabled kids, but the overall style of the toy will be so appealing, everyone on the block would want a ride! I’m very passionate about this project and creating a design to suit the needs of ALL kids is my main priority. I’m in search of true experts, all you loving parents. Anyone that would be willing to answer… Continue

Added by elizabeth hardy on November 10, 2008 at 4:21pm — 1 Comment

Braces

Justin is 6, he is falling so much more. His ankles just seem to buckle under him. The doc had inserts put in his sneakers, now what?
Would braces help? He is on prednizone, gets physical therapy, swim therapy and we stretch at home too.

Added by Heather on November 9, 2008 at 8:53am — 1 Comment

The Age of Obama

Thanks to all who responded to my post. Let's hope the new adminsitration can figure out a way to support the needs of our children while we all live through this financial crisis. Penny

Added by Penny Wolfson on November 8, 2008 at 10:19am — No Comments

The long and winding road.

Orlando, FL, New York City, NY, Chicago, IL, Phoenix, AZ, Anaheim, CA, Cincinnati, OH. These places are linked by one common thread. These cities are host to marathons which Parent Project MD has secured slots for families, friends and others are able to run to support the Run for our Sons program. Just over five years ago Kimberly Galberaith had been convinced that PPMD should get people to run at Disney World as a fund raising vehicle. Kim spoke to several participants at the Annual PPMD… Continue

Added by Brian Denger on November 6, 2008 at 9:19am — 1 Comment

Unpredictable

All marathoners will tell you the best and worst part about “the marathon” is it’s unpredictability. You can prepare, train, and practice, but no runner can be absolutely ready for what actually happens race day…and thus its great parallel with life.

For some there is victory, and others agony, there are always choices and consequences, risks and rewards, and even though there can only be one “winner”, all who finish receive a metal signifying ones dedication to completing the race… Continue

Added by Jenny on November 4, 2008 at 11:00pm — No Comments