Destiny, Life, Karma, Whatever

Earlier this month, I traveled to the New York City marathon to cheer on my friend and co-worker Ludovic Raymond.  Ludovic ran the New York City marathon in honor of my son Jonathan. There were three distinct events during this trip that indicated to me that Karma, destiny, a higher power, or whatever may exist.  

The first event occurred during dinner on Saturday night. I was introduced to Ludovic’s wife.   She teaches at the University of Pennsylvania.  She asked me if I knew any Duchenne guys attending the University of Pennsylvania. I said yes I did.  I relayed the story of how I met this young man at one of the Parent Project Muscular Dystrophy Annual conferences.  He was attending the conference with his parents.  He had his iPod on. As I walked by him I recognized a rock song. I said; “Hey I know that song, its Def Leppard.” He looked at me like I was crazy, that someone my age would know the name of the song and the name of band.  His Mom is about my age, she said “I can’t believe you listen to that music!”  Laughing I said: Don’t let my looks fool you, deep down I’m a rock and roller at heart.” One item on my bucket list is to get a tattoo; I just need to figure out what it should be.”  I said “I’m sure our sons would enjoy meeting each other and would have a lot in common.  My son’s favorite band is AC/DC.  This year at the Parent Project Muscular Dystrophy Conference in Baltimore Jon met this young man and his brother and enjoyed getting away from me for a while.  Ludovic’s wife laughed at my story and then said, I think I have this student in the class I’m teaching.  We thought that it was an interesting coincidence that she was teaching this student and that her husband was running the ING NYC Marathon in honor of a guy with Duchenne.

The second event occurred as the Run for Our Sons cheering section waited to cheer all the Run for our Sons runners as they passed. There were 34 this year.  The wife of Parent Project Muscular Dystrophy’s Board Chairman, Stefanie Killian, told me a story of meeting a family affected by Duchenne while she was teaching kindergarten.  She met this family many years before her own son Sam would be diagnosed with Duchenne. Recently, while in the checkout line of their local Target, Stefanie recognized the clerk as the sister of the kindergarten student that Stefanie taught many years ago.  Stefanie related her personal story about Sam and her family to checkout clerk.  Sadly, the clerk told Stefanie that her brother had passed away and that her family never met another Duchenne family.  Stefanie felt that this family came into her life to help her cope with Sam’s diagnosis, and for her to provide some support to help this family heal.

The third event occurred as I was waiting in the security line at JFK airport to catch my flight home to Rochester. A TSA agent asked me if a passenger could step ahead of me. I said yes, the women he was helping looked very frazzled and stressed out. I over heard her saying to the TSA agent that she couldn’t find her boarding pass or her ID. All she really wanted to do was fly home.   As she took her jacket off, she found her boarding pass and id in the inside pocket. To her great relief she was able to go through security without a hitch.  As we started pushing our belongings on the belt to go through the x-ray machine, I noticed that she was stiff and limping a little.  I asked if she ran the marathon, she said yes.  She asked if I ran the marathon.  I said no, but I was in NYC to cheer a friend on, who ran it in under 3 and half hours. I asked her how she did, she looked at me embarrassed and said that she hit the wall and couldn’t complete it.  She was running in honor of her cousin’s son who has Duchenne.  I said my son has Duchenne too and that was why my friend was running. She and her running partner raised $6,000 for Parent Project Muscular Dystrophy. My friend and I raised almost $3500.   I thought that was great that they raised that much for the cause. I told her that it was ok, that she didn’t complete the race, she raised money for a good cause and she did her best.  As we continue to chat, she told me, that her cousin was really having a difficult time adjusting to the diagnosis. I gave her my contact information to pass along to her cousin. The woman who was frazzled in the security line, went off to her gate feeling that her cutting in front of me in the line was due to a greater destiny for both of us. 

I have to agree with Steve Jobs, the co-founder of Apple Computers, who said “You can't connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something - your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life.”    

Having a son with Duchenne is not easy. There are many times where I have wondered why me. However, I have always felt that it was destiny, karma, a higher power,  that has brought the people and the knowledge I needed to help me cope and provide my son with the attitude that he can accomplish his goals.  I am truly thankful for the inspiration and courage that my son brings me every day in seeing how he navigates life despite having Duchenne.  

Learning to sail his ship

Ever since Jonathan was diagnosed with Duchenne, I’ve often wondered and reflected on what his life would be like.  I’m always surprised and impressed with his can do attitude.

As we looked at colleges and careers, Jon made the decision to live at home on his own.   I was worried that he was making his choices based on what his Dad and I thought.  When we discussed living away from home:  I said: “Jon you can live away from home if you want, we will just need to hire a personal assistant to help you get ready in the morning and at night.”   Jon said, “Yeah I know Mom, I’m not sure if I’m really comfortable with that option.”  I said “OK; think about it for a little while and let me know”.  One night Jon announced that his college applications would focus on colleges within commuting distance.  

During high school he had a close group of friends and enjoyed his high school years.  Some of his close friends went away to school. I wondered how he would make the transition into the college setting.  Would Jon make friends?  Would he be liked for his sense of humor and his bright mind or would he just be viewed as the guy in the wheelchair? Would he be able to keep up with classes? Would he find a work-study job and be able to work and keep up his studies?  Most of these questions all parents consider when their child is heading off to college and their own independence.  

Jon started his college career with a four day orientation.  Jon chose to attend Nazareth College which is a small private college that is 60% female and 40% male. Jon liked the ratio of girls to guys.  Jon was busy from 7:00am to at least 10:00pm for those four days. The schedule for orientation was enough to tire and overwhelm me.  However, he seemed to thrive with his new found independence.  At the end of each orientation day he arrived home with a huge smile on his face and said he really enjoyed his day. He used his manual wheelchair for orientation and the kids took turns pushing Jon to various events. We met with the Disabilities Office to make arrangements to store Jon’s power wheelchair on campus. He only uses the power chair to navigate campus.  A storage place was found on campus where the chair could be charged back up at the end of the day.

My worries about transitioning to college were really exaggerated. This was highlighted when my husband came home after dropping him off, and said that he met the Dean of Academics. My husband helped Jon pick up his wheelchair and get his book bag hooked onto it.  Jon took off without turning around to say bye Dad.  The dean was watching this like a slow motion movie and said to my husband “I just love seeing new students adapt to college so easily.” After a few weeks, Jon was pretty well entrenched in the college community.  He tried out for the Improvisational Comedy Club, he didn’t make it but enjoys going to the shows.  He was elected the Vice President of the Commuters Association, he joined the History Club.  He did have a difficult time finding a work study job, but did find one for the fundraising Phone-a-Thon.  

Jon was at home when he had his telephone interview for this job, I overheard some of his answers.  “My experience at Nazareth so far has been really wonderful.” “I chose Nazareth because I wanted to study Biology and I thought the sciences programs would be pretty good, since the college has a Ph.D. program in Physical Therapy.”  “I really like the campus, I have a physical disability and use a power wheelchair; I really like the size of the campus and it’s easy for me to get around.”  

Jon has made the transition to college fairly easily. He has gained some independence despite Duchenne.  Like Aeschylus, Jon doesn’t appear to be afraid of storms, for he is learning to sail his ship.  

Jon at his Freshman Seminar Field Trip

Human Spirits for the New York City ING Marathon!

 Ludovic Raymond is a co-worker who moved from Paris France to Buffalo NY. He defines himself as a ‘real’ runner since 2008. Running a marathon for a charity has been in the back of his mind, especially since the impact – in terms of fund raising – is much bigger. It is also a way to give something back to running, which has brought so much to him in the past few years. His wife, who already pushed him into running and has experience working with young people whose mobility is limited, asked him ‘"why aren’t you running for a charity?" His answer was simple, "yes but I have to do it for Christine and her son".

Ludovic and I sit next to each other in the office. I am always interested to hear of Ludovic’s successes as a marathon runner. I knew he ran the Chicago marathon. Ludovic’s passion is running marathons. I’m always impressed by anyone who has the dicisipline to train and run a marathon. It is truly an accomplishment.

One day I overheard Ludovic say that he had entered the lottery to run in the NYC ING marathon. A few weeks later I asked him if he got into the Lottery, he said no, but had another Lottery chance to enter and was waiting the result. I said; “If you really want to run the NYC ING marathon to let me know. Parent Project Muscular Dystrophy is one of the charities with open spots for that marathon.”

I have served on the Board of Directors for Parent Project Muscular Dystrophy since 1999. I am very passionate about this organization’s mission and goals. My son was diagnosed with Duchenne Muscular Dystrophy on December 31, 1997. My son Jon will never be a marathon runner. Ludovic said ‘ I’m a little nervous about the fundraising.” I said ““If you don’t make this lottery and still want to run, let me know.” “I will help you raise the money.”

We have combined our spirits and our passions to raise money to End Duchenne, Ludovic has entered to run the NYC ING Marathon under Run For Our Sons. I would like to take this opportunity to introduce you to my son Jon, who was diagnosed at 4 with Duchenne. Jon is almost 18, and still mobile, but will begin his freshman year of college using a power wheelchair. He plans on pursueing a degree in Biology. He has received his Eagle Scout Rank in the boy scouts. During his senior year in High School he participated in Model UN, the 1511 Rolling Thunder FIRST Robotics team. In addition Jon’s favorite rock and roll band is AC/DC..

Your support will raise the needed funds for future therapies and clinical trials. Jon is particpating in the Ataluren drug trial at the University of Utah. We are hoping that this drug will soon be approved by the FDA. This drug will help slow the progression of Duchenne which will allow a better and longer quality of life. Jon is also participating in a trial at the University of Gainesville on a new MRI that can read muscle, which we hope will aid in analyzing the duchenne progession without the need for a biopsy.

When Jon was diagnosed in 1997 there were 4 clinical trials for Duchenne Muscular Dystrophy. There are now 54 in the pipeline. However, the progression of Duchenne is very specific to the patient and also to the mutation that the patient has. The progression is very individualized. A 17 year old like my son could may be doing very well, but a 14 year old might not be able to walk or feed himself; by 20 they may have lost their life.

With your help we will: “Never underestimate the power of dreams and the influence of the human spirit. We are all the same in this notion: The potential for greatness lives within each of us.” ~Wilma Rudolph

Please make a donation:

http://www.parentprojectmd.org/goto/Ludovic-Raymond

Finding my Gayle

I attended the PPMD Annual Connect Conference earlier this month.  Each year I always try to come away with something concrete  This year I found the session entitled Herself First very helpful and informative. It was of course geared toward Mom's caring for Duchenne guys.  However, I think women in general need to be able to concentrate on themselves.  Women in general are usually taking care of everyone one their families and neglect themselves.  One of the points from this workshop that really resonated with me was Finding my Gayle.  You may ask what that is.  I was speaking with a friend of mine who doesn't keep up with people in entertainment.  She thought I meant a Gale storm.  I explained to her that the reference was the relationship that Oprah Winfrey has with her best friend Gayle King.

The below was posted on HerSelf First website under the one minute wellness section.  As I thought about finding my Gayle, or if I could name my personal Gayle.  I realized that at this point in time, I didn't have one. In high school I had a few Gayles that I could always call upon.  In college I had a Gayle that helped me through the tough times.  When I lived in DC I had a couple of people that I could have called my Gayle's.  I also I had two Gayle's when I worked at Kodak through times of my sons diagnosis.  I left Kodak in 2003 and for a couple of years we remained in contact, we still remain in contact but do to my working in Buffalo and my friends new jobs we really don't spend a lot of time together  The person I refer to as my Gayle will ask me how Jon is doing and how my daughter is Kat is doing.  However, we both enjoy art, theater, and interesting exhibits. Things both our husbands would not find entertaining or interesting.  I have always enjoyed doing these things and really enjoy not thinking about the Duchenne world for a little while.  I hope all my female friends will enjoy the article below and will find time to "Find your Gayle",  and visit the HerSelf First website.  I think you may find this website helpful whether or not you have child with debilitating disease.  I think as women, we all need to "Get Our Gayle".

Got Your Gayle?

Monday, June 20, 2011

For twenty-five years viewers turned in to The Oprah Winfrey Show for information, enlightenment, and often, fun. Many times that fun came in the form of Oprah’s best est gal pal, Gayle King. Whether road tripping across the United States with little sleep and too much bedhead or literally climbing to new heights in their fantastic Australian adventure, Oprah and Gayle have done it all and most importantly have seen each other through it all.

Every woman needs their own “Gayle:” that go-to girl who will see you through the highs, lows, and everything in between, no questions asked. The bonds that women form with one another are unique and can be especially important when immersed in the role of primary caregiver. Ironically, individual well being often depends on the connections we form with others.

Take a minute right now and go over this checklist:

1.Whose your Gayle?

2. How often do you talk or see each other? What types of things do you do or talk about and how does that make you feel?

3.When was the last time you asked for help in order to make time for yourself?

4.Can you name three other people you call on for support?

5.What are three things you can ask for from someone else that will help alleviate stress or make space for you to focus on yourself?

2011 Graduation!

This month has been extremely busy!  Jon has fully particated in the senior events this past month leading up to graduation. Senior Ball, Senior Bash and the Senior Convocation Ceremony.  Jon has always had a fighting spirit.  He made a decision early on not to let Duchenne get in his way.  We had an issue with the Convocation Ceremony causing Jon not be able to stand from the seat he was sitting in.  The chairs in the auditorium have moveable seat bottoms, that are not stationary.  As a result of not being able to keep the seat flat he couldn't stand by himself to go up and recieve his award when his name was called.  The presenter couldn't see what was going on so she finished her presentation. I leaned over to my husband and said, "Jon can't get off the chair."  The principal was sitting close to Jon and figured out what was going on, Jon was helped to a standing position and was called up on stage at the end of ceremony to accept his award.   

As a result, of this bump in the road, my husband and I met with the high school administrators to discuss graduation preparation.  As we were discussing the preparations. I could hear Pat Moeschen's voice in my head telling a story of a discussion he and his father had regarding using a wheelchair.  "If I'm sitting down I'm disabled, If I'm standing up I'm not."  Jon has a very similiar attitude regarding using a wheelchair.   Jon usually won't use a wheelchair.  As I asked the school administrators questions regarding how the ceremony was going to work, I could hear Pat's voice again in my head describing what his father said  to him regarding the use of the chair "Shut up and just get in the damn chair; we will be able to do a lot more stuff and have a lot more fun on this trip, without you whining and me wanting to destroy you, because you have to rest every 15 minutes."  As a parent, I could relate to Pat's Dad at that moment. 

As my husband and I further discussed the details of the ceremony with the school administrators, we decided to come up with a compromise.  Jon would use his wheelchair for the processional, and sit through most of the ceremony.  When it was time for the presenting of diplomas he would be pushed over to the stage area where he could stand and walk accross the stage to receive his diploma and walk back to his chair. We discussed who would push Jon into the ceremony, the administrators said "We won't have a problem finding a teacher, they would all probably fight for the chance; Jon is really a likable guy and he will be missed next year."    When my husband and I came home from the meeting we spoke to Jon regarding the chair.  Jon's reaction was typical, "Mom I can walk in with eveyone else."  I said "Jon there are 350 kids in your graduating class.  You will hold everyone else up during the processional. Do you want to fall in front of 5000 people and have someone lift you up in front of all those people?".  His reply to me was classic Jon,  "OK, I will use the chair, but I don't want my Mom or Dad pushing me, I'm friggen 17."   I said "No problem, we won't be pushing you, one of the teachers will push you over to the stage area and lift you when it's time for you stand."
  
We scheduled a private rehearsal so Jon could practice walking accross the stage wearing is Cap and Gown.  It went fine without any problems.  We wanted to make sure the gown didn't cause any issues with his gait. My husband went with Jon to the rehersal with all the other kids, so we could make sure that the plan would work and we could show the teacher how to lift Jon.  Both rehersals went fine.   Jon and the school administrators were comfortable with how things will work out.

I asked Jon if he wanted to decorate his chair in the school colors. Jon said yeah, but I don't want anything too childish and Mom don't go overboard OK." I said how 'bout the FIRST Robotic team 1511 Rolling Thunder colors. His chair already had red underglow lights on it from other FIRST Robotics team events. He agreed. The arms and the back had red camo. On the back panel we put red and black graduation caps. The wheel spokes had red and white streamers threaded through them.

Jon the graduate and his chair where now both ready for graduation.  Graduation went off without a hitch.  When Jon's name was announced he walked accross the stage to a huge cheer from his classmates and the people in attendance!  His classmates showed Jon how much he inspired them.  

Jon has a busy summer planned.  Between the medical visits to Toronto, Utah and Gainsville; attending the PPMD conference and attending Double H camp, Jon plans on starting to write his Sci Fi book series and get ready to study Biology at Nazareth College. 

Jon like Theodore Roosvelt has always held to the attitude of "Believe you can and you're halfway there."   

Knowledge!

My knowledge and my ignorance were highlighted over the past couple of months.

We changed Orthotists. Jonathan for many years wore custom made night splints and shoe inserts. The new othotist explained to us how poorly made Jonathan’s old inserts and night splints were and how they really were not helping him. The night splints were heavy and caused his legs and feet to sweat. The shoe inserts were not helping and caused his feet to come out of his shoes. All this time we thought we were making things better. We have new inserts for his shoes, they are much more comfortable and actually provide the support they are supposed. Since Jon is 17 has stopped growing. His range of motion is still good in his ankles, so for now Jon can stop wearing his night splints, Both my husband and I were trained on how to check Jon’s range of motion and determine if Jon should have new night splints. According to the orthotist, since Jon’s bones have stopped growing, he is less likely to need night splints now. It was much more important that he wore the night splints when he was younger. He made new shoe inserts which seem to be much better for his balance, posture and overall mobility. With these inserts the orthotist recommended basketball sneakers to provide more support. The othotist was surprised at how the old inserts were made, and thought they did more damage than good. Both my husband and I were crest fallen to think that the old inserts may not have helped as much as we were lead to believe.

During his Eagle Scout ceremony and while taking pictures of his friends before the Senior Ball, it struck me just how short he really is. His scout troop has some very tall guys and two of his good friends are really tall and thin guys. Jon is 17 and has been on steriods since he was 5, and is 4 ft 6 in tall. My husband, daughter and I are not very tall, so it’s not so apparent to us. While seeing the fast differences in height, it made me question whether or not we made the right descision in putting Jonathan on a daily dose of steriods at such a young age. When my husband and I decided to use steriods, a standard of care and hadn’t been developed, and the trials on which dosage was best were years away. With the help of our pediatrician and Dr. Biggar we put Jon on a daily dose of steriods. In the long run, we felt it would be worth it. Today, Jon’s overall health is very good. There are no issues with his respiratory function and his cardiac function is good with the help of the cardiac maintenance drugs.

However, Jon is 17 and Duchenne is what it is, Jon can no longer climb stairs. When he falls he can no longer get up by himself; he needs someone to lift him; he needs help dressing in the monring and undressing at night. He can get in and out of a car with some assistence but can no longer get in and out of the SUV without being lifted. But, he still walks independently, and doesn’t use a wheelchair full time yet. It is inevetable that Jon will need a wheelchair.

Looking back, would I change any of it? Like everyone, we wish Duchenne never came into our life. I would have liked to meet the new orthotist when Jon was younger. I think we would have made the same decision regarding the steriods. Jon as always said that he would much rather be short and still able to walk for as long as he possibly can.

Even after all these years navigating Duchenne, we continually learn and must continually ask the questions and continually seek out the gold standard of care. So to quote Confucious: Real knowledge is to know the extent of one's ignorance.

Bat Man!

Jon finally became and Eagle Scout in February. Achieving this honor took 12 years and 33 Merit Badges, the Rank of Brotherhood in the Order of The Arrow. His Eagle Scout Project involved his love of nature and biology to build Bat Houses. Jon’s service coordination for DDSO in NY State is thru Heritage Christain Home. Heritage Christian Home supports independent living centers, a working farm and a therapy riding stable. Jon built a demo bat house, and 6 other bat houses for one of the independent living centers and the therapy riding stable. He also built nesting rabit hutches and a new roof for the Therapy Rabbit Hutch at Springdale Farms. In addition he made a presentation on bats at the annual festival for Springdale Farms. After a couple of clerical errors regarding rank advancement, his Board of review was scheduled. He did well during his board of review and the reviewers seemed impressed with all that Jon did. Jon called me right after his board of review. I could imagine the smile on his face as he spoke to me. “Hey Mom, after 12 years of scouting and 33 merit badges later, I’m finally an Eagle Scout.” The Eagle Scout rank is the highest rank you can achieve in Scounting. The statistic is 1 in 3000 scouts achieve this rank. Even fewer scouts achieve this rank with Duchenne Muscular Dystrophy.


You may ask why Jon decided to build bat houses for his eagle project. His love of Bats started while in Gainesville for the Imaging Duchenne Muscular Dystrophy Study. The University of Florida at Gainesville has a very large Bat Colony. They have two huge bat houses that house approximately 6,000 Mexican bats. We love to watch them at twilight while they make their feeding migration. Jon thought that Bat houses at the farm and at the stables, would help the eco-systems. Bats are very good for the environemnt as they feed on insects, and their droppings are good fertilizer for the soil. He hopes that the residents of the living center will enjoy watching bats making their feeding migration at twilight. Bats are pretty small. Their feeding migration is pretty fasinating. One scout bat circles the path to make sure the timing is right. It makes on circle around the migratatory pattern and then calls to the other bats. The bats fly overhead in search of insects and food. The large colony in FL is really truly facinating to see. As a result of watching the bats and watching various nature programs on TV, he has decided to seek a Bachelor of Science in Biology with a future focus in Zoology and Paleontology. He wants to be a research scientist. To pursue this goal, Jon has decided to live at home for his undergraduate degree. He has applied to RIT and Nazareth in Rochester, NY.

Jon recently received his acceptance letter from RIT and is now awaiting his status from Nazareth. Jon has always told me, that he won’t let having Duchenne Muscular Dystrophy stop him from pursuing a goal that he has set for himself. Our job as his parents is to help Jon remove any obsticles that may prevent him from achieving his goal. So far I think we have done a decent job at aiding Jon in reaching his dreams and aspirations. As we look toward his college career we need to maintain our flexibility in helping Jon reach his goals.

Update April 2011:
Jon's formal Eagle Scout Ceremony was held on April 13, 2011.  Jon recieved many honors, the ceremony was covered by both YNN News.

http://rochester.ynn.com/content/539972/teen-with-duchenne-muscular-dystrophy-keeps-on-achieving/

Advocacy really does matter!

My advocacy efforts started very early on. It all started at the PPMD Annual Conference, when Dr. Lee Sweeney said “To improve lives of patients with Duchenne and Becker Muscular Dystrophy the real change would have to come would have to come from the government through the National Institute of Health. Awareness about Duchenne and Becker needs to be increased within the NIH community”. I did not know any one at the NIH so I decided to contact my Congressional representative. In 2000 it was Congresswoman Slaughter. She was interested in health issues and always supported the NIH. I naively phoned her Washington office and requested an appointment in the Rochester office. Her appointment scheduler was gracious enough to set the appointment. I met with the Congresswoman and one of her Legislative Aides in the Rochester office. She listened to me talk about my son and talk about what it was like to have a son with DMD. I left her information about PPMD and what we were trying to accomplish. She was very kind. But, I did not know what the next step was. There was not any legislation for the MD Care Act, so I just kept emailing her office periodically to let her know how Jonathan was doing.

The first legislative conference in 2001 was to gain support of the MD Care Act. I traveled to Washington. I had no idea what to expect I had never lobbied congress. It seemed really grandiose. I knew, I needed to be Jonathan’s voice. I was really nervous and afraid of tripping over my tongue when it came to the talking points for the MD Care Act. All the people conducting and speaking at the training session were really young and smart. I was a 40 something Mom from upstate NY, talking about scientific issues and terms that I had trouble pronouncing. I was grateful to find out that I would not be attending the meetings on my own. The meeting schedule had been set for me. I was disappointed that I was not scheduled to meet with my representatives office. We had meetings with other representatives. We also meet with the Health Legislative Aides from both Senators offices. All those meetings went smoothly. I was hopeful that our elected officials from New York would help. After the meetings on the first day, there was a reception. Invitations went out to the offices inviting the members and the staff. It was really crowded and there were lots of people. As I passed through the crowd someone said, “Hey, Christine this person is looking for someone from New York”. I said, “I’m from New York”, whose office do you represent?” She said was from my representative’s. office. I was delighted; I proceeded to have my meeting with my representive’s Health Legislative Aid n the middle of the reception. My representative signed on to the MD Care act and signed on to the appropriations bill the next year in 2002.

In late 2002 the congressional districts were re-zoned. I had a new representative. I attended the 2003 Advocacy Conference. I did not have a meeting scheduled with either Senator’s office or with my Congressman’s office. I had meetings with lots of offices outside of my district. They went smoothly and for the most part were successful. I stopped by the Senate and my representative offices to leave information. I was able to meet with a Legislative Assistant in my representative’s office. She was interested, but made reference to my representative being a Cardinal on the house appropriations committee. I had no idea what she meant. She took the information and gave me a business card with the name and contact information of Health Legislative Aide. I came home to upstate NY. I followed up with everyone I met with during the 2003 conference. I especially followed up with both Senator’s offices and with my representative’s office. In 2004, I was unable to attend the Advocacy Conference due to a project going on at work. I kept up contact through voice messages and e-mail.

When I attended the 2005 Advocacy Conference, I had meetings scheduled with both NY Senator’s, as well as my Representative’s office. When the delegation met with the Senate offices both of their Health Legislative aides remembered my name and were delighted that we finally got to meet in person. Both Senator’s signed onto the appropriations letter.

We met with my Congressman’s office. The Congressman was a senior member of the influential House Appropriations Committee, which determines how much money goes to DMD programs. It was really important that we gained his support. The meeting was very successful. He signed on to the appropriations letter. His Health LA wanted my family to meet with him within in our district. My son Jonathan, my daughter Kathyn and I met with him in the Syracuse office. We were able to discuss Jonathan’s and Kathryn’s perspective about living with DMD. I was able to thank the Congressman for his support in person. I was also able to discuss PPMD's specific federal funding request and its impact on the Muscular Dystrophy Center of Excellence at the University of Rochester as well as the CDC surveillance project that is collecting critical information on muscular dystrophy in western New York.

My relationships continued with these offices and Health Legislative Aides through the 2008. In 2008 NY had a new senator and my district had a new representative. I was able to build a relationship with my new representative and gain his support. Jon was also able to meet with him at the Model United Conference in Syracuse. We have a new congress for 2011. This year I have the same Senator’s and a new Representative. I can’t attend the conference this year. But I will be diligent in educating congress about Duchenne and Becker Muscular Dystrophy via voice mail and email.

Advocacy really does matter!  Click to hear Pat Furlong and PPMD's Board Chairman talk about advocacy.

Please click here to read about PPMD's advocacy history.

Faith and Hope

"Faith is the very first thing you should pack in a hope chest. " ---Sarah Ban Breathnach

As 2011 begins, I am hopeful that there will be new research breakthroughs for Duchenne. My family is grateful to the generosity of the Getler and Ginder families in support of PPMD’s cardiac initiative. We begin every year with a bitter sweet celebration. New Year’s Eve of 1997 began our journey. It’s been 14 years since Duchenne entered our lives. Jon has always told me that Duchenne does not define him, it’s just something that he deals with. He has never let Duchenne stop him from trying something he was interested in.

2010 celebrated normal high school milestones, prom, participating in Model UN conferences, SAT’s, ACT’s. 2011 finds us looking forward to new milestones, picking colleges Senior Ball, Senior Bash and Graduation.

Jon is always hopeful for new research breakthroughs. Even though traveling from Western NY to Utah causes some stress and extra work at school, Jon is thankful that he is able to be back on Ataluren. As we were driving the other day, Jon said “Mom, I feel pretty fortunate that I’m able to participate in the Ataluren trial, cause I’m still mobile. Will the FDA allow trials for the non-ambulatory kids, I think it’s unfair that kids who can’t walk, can’t participate in trials for new therapies.” “Can’t they figure out some kind of measurements so non-ambulatory kids could participate in these trials?” I responded with: “I know that they are working on it, but it’s not easy. Drug companies need to show patient benefit for a drug. They need to show a measureable benefit that will provide a medical qualitative benefit.” Jon’s response was “Mom, that’s pretty complicated to figure out, I hope they will figure it out soon, I will always remain hopeful and have faith that in my lifetime we will see that happen as well.”

Jon and I end 2010 and begin 2011 with faith and hope that research breakthroughs will help END Duchenne.