How the Foundation is Helping 

Joey was a home body.  He liked to be at home surrounded by family and friends.  He loved to draw.  Joey wanted to become a cartoon artist.  His other hobby was collecting pens.  He liked to get on eBay and purchase unique pens. Joey’s disability didn’t stop him from dreaming and believing.  He taught us all how to keep moving forward because if he could persevere so could we.  His humor taught us about having empathy and not sympathy because he was always concerned about everyone else while we were worried about him.  He taught us to never set boundaries or be afraid of chasing our dreams.

The Muscular Dystrophy Family Foundation ensured that Joey had “No Boundaries”.  They assisted with the purchase of equipment while advocating to assist Joey in living his abilities and not his disability.

Joey passed away two weeks before his nineteenth birthday.   It was very sudden.  Although his passing has left a hole in our hearts, we feel blessed to have had Joey in our lives for the short time he was here.

Living with this disability is hard enough without knowing where to turn or what to do.  And this is what the foundation provided for us.  This foundation is there twenty four hours a day seven days a week – they are there whenever you need them.  This is why we want to pay it forward, so they can continue to assist other families.  I don’t know how we would have done it without them. 

 Dear NBFF/MDFF: 
It was great to visit with you last Friday morning even though we were all a little tired after Bailey’s sleep test.  I am glad we were able to talk about the problems we are having with Bailey’s chair.  Thank you so much for your help on setting him up with a loaner chair.  What a difference!  After having some independence in his power chair and then losing it again was devastating to my twelve year old! It was difficult for him to again have to rely on other to get him where he needed to be – both at home and at school.  The chair has given him some of his confidence back and to also let go of some of his hostility about his other power chair being broken and the difficulties we have experienced with that situation! Thanks again we will be in touch!!! 

Love, Duane, Lana, Paige and Bailey 

Dear Family Foundation:
I just wanted to drop a note to thank you for the wonderful NBFF/MDFF Christmas Party.  It was the best that I have attended yet!  Everything seemed put together so thoughtfully, from the age – and gender –neutral to the fruit baskets and door that I am sure everyone enjoyed given the state of the economy and the burden it has placed on so many families.  Anyway, I just wanted to say thank you, and let you know my dad and I had fun.

Merry Christmas, Emily Munson – Age 24

Dear Muscular Dystrophy Family Foundation:
First and foremost, I would like to thank everyone who is involved with the foundation for their very important work.  I can’t express enough how appreciative my family is for the generous help I have received. As much as I try to find resources for my family we cannot afford all of the equipment we need.  The progression of my disorder has made me too weak to even operate the controls of my wheelchair.   I have seen the physician at the MDFF clinic and have been measured for the power chair I need.  My insurance stated that they would only pay a portion of the cost of this power chair.  NBFF/MDFF has agreed to pay the remaining portion of the cost of the chair. 

Thank you again for your help!

To Our Wonderful Friends:
Hello, my name is Dawna and my daughter Sara has Spinal Muscular Atrophy.  On a daily basis life can be very tough for her and the gift from the foundation has made that life a little easier.  Sara loved taking a bath but because of her size it was very hard on me to give her one.  Now with her lift she can be “normal” and take a bath. NBFF/MDFF is a great organization that has helped many families with equipment, medical care, etc.  We do not know what we would do without them.  I think it is great that you are helping the families out by your generous gift. I hope that NBFF/MDFF will be around for many years to come.  The people in the organization care about the families and that means so much to us.

Sincerely,
Dawna and Sara

 My lovely daughter, Hannah was diagnosed with Muscular Dystrophy when she was four and a half months old.  We were told that she only had two months to live. 

When she was three years old we became part of the NBFF/MDFF family.  We contacted the case manager at the foundation and she scheduled us into our first clinic appointment.  From the very first clinic appointment it was an instant connection of support. 

We started participating in the foundation activities – the foundation summer picnic and the Christmas Party.  These events connected our family to other family members who have children with Muscular Dystrophy.  We have built wonderful connections due to our interactions with the NBFF/MDFF families. 

Due to the support we have received from the foundation – we wanted to give back.  I am a volunteer—working in the office and educating others about the mission of MDFF.  I organize and participate in fundraisers.  Hannah and I raise funds at yard sales, selling ribbons at Walmart, recruiting individuals to donate money and or items for the foundation.

Hannah loves volunteering and meeting new people.  NBF/MDFF makes a difference in the lives of families –they advocate for services, purchase equipment, clinics, and are supportive of the families 24/7 and encourage clients to live their life to the fullest of their abilities. 

It takes funding to make these services happen.  Hannah and our family have benefited from the services at the foundation and have a strong desire to work hard for the foundation.  You too can be a “difference maker” – just as Hannah and I are.   

 Hannah and Jenny