My husband & I had been looking off & on for a van months before our huge yard sale. It just happened one day he looked on the ESL Bank Swap Sheet:

The price Mr. Accorso gave was more in our budget range than any other vans we’d come across!

Naturally, my husband was leaving for a week-long business trip, so we asked if they could hold it, till we could come see it. We sent a family friend to check it out and it seemed like a great fit! we still wanted to se it for ourselves.

Ironically, my husband & I always said we were NEVER going to buy a minivan, EVER. We were diehard Honda sedan fans. Ah… youth. Well, life changes in ways you’d never expect.

We met the Accorsos the next weekend. They were friendly and helpful, and really wanted to get rid of this van. Which we were really wanting to buy it! As we got to know them, it turns out they just lost their son to MD.

Nicholas Accorso was diagnosed with Muscular Dystrophy when he was 10 years old. He appeared on the MDA Telethon when he was about 11 and met Gabe Dalmuth for the first time. He passed away August 18th, 2011, 19 years old. Nicholas was a friendly, curious person who was adventurous and loved baseball. He also loved to travel. He explored the world right up to the end, traveling to South Dakota on his last family trip to use a Federal Parks Pass. Despite his condition, he was very accepting of his illness and did not let it get the best of him. He also had Autism, making his outward, social demeanor all that more special.

Here I am, back from near death myself (my embolism), the MDA Personal Achievement Recipient, and I am receiving the van that took this boy on his travels. All of us had shared some tears.

I know that Nicholas’ family misses him, but I am very grateful. I hope I can make many memories happen with my family in this van.

P.S. Thank you to everyone who helped me to raise money. It has helped us put a dent in the purchase. Now I can go places with my motorized wheelchair – I feel so free!

I had what I THOUGHT was a panic attack at work. Turns out I had a HUGE (substantial) pulmonary emboli. That is PLURAL for embolism. And it was not related to the ALS.

Needless to say, I’ve been out of commission since then.

I missed several MDA events, including the telethon. Basically I’m recovering slowly, but day-by-day getting better. I’m doing physical therapy and I’m able to work from home. I’m trying to get better so that I can return to the office.

One of the great things, aside from my wheelchair accessable van, is meeting some very kind people. They are really helping me to get better. I am so grateful!

Good Evening!

On behalf of the Rochester & Buffalo MDA, I’m honored to speak with you – employees and friends of ACOSTA. Your generous, national support to find a cure for Muscular Dystrophy, has totaled over $75 million dollars, since the inception of your Aisles of Smiles Campaign in 1985.

The Aisles of Smiles has, at its roots, a simple idea born out of a father’s desire to raise funding and awareness about his son’s disease.

From something simple come great things.

I’m so grateful that many of you came out today to participate in this year’s golf tournament at Cobblestone. Over 130 participants have raised more than $125,000 for the Buffalo and Rochester area.

What I’d like to do is to make a connection between the dollars you have raised, to the people affected by neurological diseases.

Illness affects everyone around them – children and adults alike.

In my case, I was diagnosed with ALS in April 2010 – and I can assure you, my disease affects my friends, my family, and especially, my six year old daughter.

Since ALS is a progressive illness, I need constant monitoring from a variety of doctors and specialists, as they check and maintain what nerve health I still have.

I know it sounds daunting – there is still no cure for ALS, however, the treatment is constantly changing and improving. A real breakthrough for treating ALS can be seen at the University of Rochester Medical Center.

An ALS clinic is held every month.  The structure of the clinic is an amazingly simple and humane concept: have all of the specialists meet in one place with me, rather than me go to them. In a few hours, my Neurological Team has an accurate snapshot of my condition.

It is a collaborative approach to medicine. And it’s a real convenience for me.

From something simple come great things.

Collecting and maintaining the best and the brightest for my Team isn’t cheap. Neither is the support they need to stay on top of this disease. The financial support you provide, is making a difference to finding a cure – and to those affected with ALS, like me.

Financial support has the effect of providing care to my family as well…

Recently, I attended another MDA event.  I was able to personally thank a generous donor for a grant to install a stair lift in my home. It’s a miracle device that has given me back my independence and it also gave me back access to my home.

But most importantly, it gave me an insight into my daughter’s view of this illness.

After I thanked her, my 6 year old went up to her and said:

“Thank you for my mommy’s chair. Now she can float upstairs like an angel!”

From something simple come great things:

The healing power of your time and support really do make a difference.

They give us a chance to hold onto our dignity and our sense of normalcy.

We can be active family members – and to witness them at their best.

In the case of my daughter, her simple observation was not of sadness or pity, but of happiness and gratitude.

My prognosis has been lengthened from months to years. With this extra time, the MDA, and the continuing support of all of you, I will succeed in my simple goal:

I will see my six year old daughter graduate from high school.

Thank you.

Multi-Family Sale/Benefit of Joy – ALS – help get a van.

June 9th-11th 9-3, Sat half price/bag sale

Furniture, Mat Cutter, picture frames, adult/children’s books, toys, antiques, collectibles, holiday\ craft supplies, housewares, bikes, clothing, TV, VCR, VHS, DVD, pet supplies.
_________________________________________________________

My Name is Joy Parker. I am 40 years old. I have a great job, a nice house & a fantastic family. I also have an incurable & fatal disease called ALS (Lou Gehrig’s Disease).

What is ALS? read more: http://www.als-mda.org/

I need a van to get around with my scooter.

We started by cleaning out our house to raise money for it. Since then, I’ve had more than 10 families add items to the sale! Thank you all!

We got it!!!!

Thank you for the chance to say a few words to you tonight about ALS and the important research being done to find a cure.

ALS is a rare neuromuscular disease that affects about 1 in 100,000 people.

While its cause is still unknown, and the cure remains elusive, we celebrate the progress that’s been achieved by making May “ALS Awareness month”.

We do so as a tribute to a player who, at the height of his career, announced to the world on May 2^nd, 1939, that he would be leaving his position as Captain of the Yankees.

The sudden shock of seeing an athlete go from a 363 average to only 4 hits in the first 8 games of the ’39 season gave the world a dramatic example of how quickly ALS can progress, and that no one, not even The Iron Horse, could fight it.

I am referring, of course to Lou Gehrig and the disease that bears his name.

When he made his famous speech, he said he was lucky.

He said it was because of the love and support from his family, friends, and fans, that he could face ALS as he did the game of baseball: with heart and a winning attitude.

Today, the MDA and the University of Rochester Medical Center, are helping ALS patients like myself face this disease,  the same way Lou Gehrig did -  and to live each day to its fullest.

On behalf of the MDA, I ‘d like to thank all the fans of the Rochester Red Wings that are here tonight for your support, and encourage you to do what you can to support ALS research to help us find a cure.

Thank you.

My name is Joy Parker and I’m grateful to have been asked to speak with you tonight.

I must tell you what a wonderful feeling it is to see so many people here tonight united in the search to find a cure for ALS.

I was diagnosed with ALS last April. For years I had felt my body grow weaker, and for years I all I wanted was my doctor to tell me what was wrong. One of the first things I learned when I thought I may have a neurological disease is – it’s not so simple to diagnose.

There isn’t a single test for it.

It requires months of visiting different specialists and doctors who begin eliminating all of the other disease you don’t have, until they run out of options-

and finally the only diagnosis left is ALS.

After almost two years of testing and observing, when my neurologist said those three letters, it was like a punch in the stomach.

Each day I wake up and ask myself, “What did I lose today? Can I still walk unassisted? Will I be too tired to work?” The hardest thing is when Nicole, my 5-year-old daughter, asks me, “Mom, when will you get better”?

ALS is a very complicated disease. It can affect any part of me that has a muscle, as it attacks the nerve connections to my muscles. I am in no pain, but I am tired.

I feel…heavy.

I will admit, it is a little weird that I cannot assume that the things I do today will be there for me tomorrow.

I can let it overwhelm me, or I can take it on.

If I can’t choose to have this illness, I can choose to take it on.

And that’s what I’m doing – with your help.

Since ALS is an ever-progressing illness, I need constant monitoring from a variety of doctors and specialists as they monitor and maintain what nerve health I still have.

I know it sounds daunting that there is still no cure for ALS, however, the treatment is constantly changing and improving. A real breakthrough for treating ALS can be seen at the University of Rochester Medical Center.

An ALS clinic is held every month.  The structure of the clinic is an amazingly simple and humane concept: have all of these specialists meet in one place with me, rather than me go to them. In a few hours, my Neurological Team has an accurate snapshot of my condition.

It is a collaborative approach to medicine.

And it is a real convenience for me.

But collecting and maintaining the best and the brightest for my Team isn’t cheap. Neither is the support they need to stay on top of this disease. But I am here to tell you tonight the financial support you provide is making a difference to finding a cure-and to those affected with ALS, like me.

When I was diagnosed with ALS, I was immediately put on the breakthrough drug called Rilutek. Although each month’s prescription is over $1,000, its results are priceless. Because of this drug, I am able to still walk with assistance and I am keeping the symptoms of ALS at bay.

It is one of the reasons I can stand before you tonight.

My prognosis has been lengthened from months to years. And that’s a good thing because with medication, the support of the MDA, and the continuing support of all of you, I will succeed in my goal:  I will see my five year old daughter graduate from high school.

Thank you for all of your efforts and continuing to support research for finding a cure for ALS.

My name is Joy Parker and I’m grateful to have been asked to speak with you today.

I was diagnosed with ALS last April. For years I had felt my body grow weaker, and for years I all I wanted was my doctor to tell me what was wrong. But when all the tests were done, and my doctor said those three letters, it was like a punch in the stomach.

Each day I wake up and ask myself, “What did I lose today? Can I still walk unassisted? Will I be too tired to work?” The hardest thing is when Nicole, my 5-year-old daughter, asks me, “Mom, when will you get better”?

People have told me how brave I am to be facing ALS at such a young age. But I will tell you a secret: my bravery comes from those around me. My family, my doctors, my friends…. and you.

Because seriously, you can’t find anyone braver than New York Firefighters.

While there are many people out there raising money for MDA and ALS, only Firefighters are willing to literally stand in traffic to collect it.

You might not know this, but Firefighters have been working on a cure for ALS since before I was born. The Fireman’s Boot Drive has been around since the mid 1950′s, and is one of the longest running fund drives for neuromuscular diseases like muscular dystrophy and ALS.

Your hard work here today will have real results tomorrow. When I was diagnosed with ALS, I was immediately put on the breakthrough drug called Rilutek. Each month’s prescription is over $1,000, but its results are priceless. Because of this drug, I am able to still walk with assistance and I am keeping the symptoms of ALS at bay.

My prognosis has been lengthened from months to years. And that’s a good thing because with medication, the support of the MDA, and the continuing support of all of you, I will succeed in my goal:  I will see my five year old daughter graduate from high school.

Thank you for all of your efforts and continuing fight against ALS.

My next show coming up is at the First Unitarian Church in the Williams Gallery. It’s a Church Member show so I only have 1 photo. It’s my gorgeous Windows with Baskets shot. The show runs from April 8 to May 16th.

This super cool show is an anonymous one for the Rochester Contemporary Art Center called 6×6. I jumped into using acrylics this time! One I’ve called Summertime and the other is called ALS. I had a great time & my youngest daughter made something as well! This show runs June 4 until July 10 – but they will have all the artwork on the website for people to purchase for $20 a piece. Proceeds go towards the art center.

If you’ve been following my tweets you’ll see that I’m trying to do a little poetry for poetry month. It was something I thought about doing for a while, but then we needed something for our Poetry Month page at my real job & I thought it might be fun to get people engaged, so far, not so much. Oh well! I encourage everyone to write a few words on Twitter and use #wxxipoems to see what we can come up with!

Do these regimes not understand that this life is one of a global consciousness?

My 5 year old is super smart, artistic, musical AND loves science experiments. She also has been head over heels for Disney Princesses since she was 2! Now isn’t this a lot like the old argument about Barbie being a bad role model?

I remember pretending to be a princess when I was little. Every time I got in trouble, I would hope that someday my real parents would come get me and take me back home to the castle! I loved pink. Later on, my friends and I played with Barbies, and frankly, we never thought anything about Barbie’s freakishly big boobs because our dolls were too busy playing strip poker, getting divorces or becoming rock stars.

It seems to me that being a feminist and liking traditional girl toys/ideas is like being a lipstick lesbian these days. I’m raising 2 daughters. They like pink. Not all girls like pink… I liked pink as a girl… I still like it.

I know my 5 yr old is chomping at the bit to wear makeup and nail polish, but she understands that Mommy says not until you’re older. If some moms took the time to explain commercials and marketing, as well as we have in our house, then perhaps the manufacturing giants won’t be cramming pink down everyone’s throats. Parents are the ones pushing the kids to be older. I don’t plan to have a spa party for my Kindergardener, but the 10th grader is a different story!

Everything in moderation people. Did we get the full princess treatment at Disney World? Hell yeah! It’s a once in a lifetime chance. Treating little girls as if they are princesses, on an everyday basis, is not moderation. Not teaching your daughters about commercialism and consumerism at an early age, is NOT good parenting in our current society.

On the flip side, I enjoy taking care of myself by going to a salon or a spa. I like to be pampered. And what woman on her wedding day doesn’t want to be a princess?! Ok I wanted to be a rock star. But seriously, take back the blame and put it on the parents who can not stand up to their kids!

Moderation, folks –  and education, will keep your girls as girls and to grow into independent thinking women.