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ALS Leadership Conference Report
2/25/2015

By Jim Pinciotti

The National ALS Association Leadership Conference is an annual gathering for volunteers and staff from across the country to learn, share, plan, focus on our goals for our mission priorities in the upcoming year, and celebrate our heroes living with ALS.

As you might imagine, this year a major topic of conversation was the ALS Ice Bucket Challenge.  We celebrated the awareness and funding that resulted from the IBC.  We strategized about how to seize this historic opportunity and continue the momentum.  We discussed the challenges that lie ahead and the imperative that we keep our focus on our mission and our families as we enter this transformational time for The Association and the fight against ALS.

The excitement and energy at the conference was palpable.  The meetings, workshops, and discussions were excellent.  One of the best parts of the conference was the sharing of ideas, programs, and concepts between Chapters.  We are extremely blessed to have a large group of fiercely dedicated staff and volunteers across the country from whom we all learn and benefit.  All of us who attended left with a briefcase full of ideas and topics we will explore and employ.

One other theme of the conference was collaboration.  The ALS Association has engaged in and espoused working with others for as long as I have been involved, but the proactive nature and prioritization of collaboration within the organization, the country, and the world has never been greater.  It truly takes, not a village, but a world to tackle a beast like ALS and our Association continues to take a leadership role in bringing everyone into the tent. 

A highlight for me, and I would say for everyone, was our “Heroes Luncheon” where we met and recognized three of the countless heroes we all meet every day.  This year we celebrated the three people who helped give rise to the Ice Bucket Challenge – Tony Senerchia, Pat Quinn, and Pete Frates.  You might imagine it was a moving, wonderful, emotional, and well deserved tribute. Nancy Frates, Pete’s mom, spoke to ALS Association staff and board members from Maine to Hawaii and left us more energized and committed than ever before to put an end to ALS for good. Believe it or not, every person here is looking forward to being unemployed.

Everyone who attended the conference left empowered, renewed, excited, and eager to embrace the challenges, tackle the obstacles, focus on our mission, and pursue our vision of a world without ALS.  All of you reading this are part of our team and we are counting on you. The world’s eyes are fully open to ALS and this is our opportunity to accomplish something we have dreamed of for over 75 years – a world without ALS.

Introducing New Chapter Board Members
2/24/2015

The ALS Association Greater Philadelphia Chapter is proud to announce new additions to its Board of Directors to put the Chapter in a strong position for 2015 while staying true to the core mission of covering all the bases to fight ALS through Patient Services, Research, and Advocacy.  The board changes include Claire Choppy, Raina Gorman, Danielle Mariano, and Brad Wenger

“Following the global phenomenon of the ALS Ice Bucket Challenge, it is critical that the Greater Philadelphia Chapter lead as never before in the fight against ALS, and these new members of our board will be instrumental in advancing the cause of ALS research, advocacy, and patient services,” said Chapter President Ellyn Phillips, who has worked with the Greater Philadelphia Chapter for over 30 years. “Everybody associated with this organization takes the fight against ALS personally and our board is fully committed to exploring every avenue to provide families with ALS the care and support they need and deserve.”

These new board members include:

Claire Choppy Conway is Vice President, Store Manager at Macy’s Exton Square Mall. She has heled several positions within Macy’s over the past 21 years in the Philadelphia area. Claire’s dedication to the ALS cause came about after her father, Louis A Choppy of West Grove, PA, battled the disease, passing away in December 2010. He and his devoted wife Marian Choppy utilized many programs of the Greater Philadelphia Chapter, especially care services at the Certified ALS Treatment Center at Pennsylvania Hospital. Currently Claire Choppy  lives with her husband Bill in Wayne, PA and they have two sons, Liam and Quinn.

Raina Gorman lost her mother to ALS in 2008, less than one year after she was first diagnosed with the disease. She became an active volunteer with the Greater Philadelphia Chapter in the years following, assisting others who lost a family member to ALS. After the death of her mother, Raina acquired the rights to the clothing franchise Plato’s Closet and became a small business owner. After the birth of their only child, Marlo Quinn Gorman, Raina and her husband Matthew embarked on yet another business venture with the help of 3 other childhood partners. Together they converted an abandoned building at 1301 Locust Street into a 3-story 12,000 square foot early childhood enrichment center called NEST. NEST opened in 2011 and is patronized by more than 750 Center City families today.


Danielle Mariano has worked at the Department of Auditor General in Harrisburg for eight years, leading the bureau that performs operational performance reviews of the Commonwealth’s public education entities, including school districts, charter schools and career/technical schools. Her father, Mike Kilpatric, was diagnosed with Bulbar ALS in February 2010 and passed away in August 2012, three months shy of his 40th wedding anniversary. Mike received care at the Certified ALS Treatment Center at Pennsylvania Hospital and joined the board of the Greater Philadelphia Chapter, where he developed the Chapter’s Public Awareness Strategy. Danielle and her mother Maryann established the Mike Kilpatric Transportation Program in 2014 to ensure people with ALS could get to and from doctor appointments and attend patient events. For five years, Danielle has worked with the Greater Philadelphia Chapter in many ways, including supporting the Walk to Defeat ALS®, speaking out as an advocate, and organizing with the South Central Pennsylvania Advisory Committee.

The Greater Philadelphia Chapter Covers All the Bases of Research, Patient Services, and Advocacy.  Find out more at www.alsphiladelphia.org or follow us at www.Facebook.com/alsphiladelphia and on Twitter, Instagram, Pinterest and YouTube @alsphiladelphia.

Happy Birthday Mrs. Denman
2/13/2015

The students in Whitney Denman's art class showed their appreciation for her on her birthday this year. Mrs. Denman is living with ALS, but she still loves being a teacher and spending time with all of the kids who make every day fun and special. Here is a sample of some of the artwork they made for her.

 

Special thanks to the students at SS. Philip & James School for raising $500 to fight ALS in honor of their art teacher. 

As Mrs. Denman said, thanks to all of the love and support from the students, families and staff at her school: "Spread the word…say it loud…say it proud…I am not going down without a fight with ALS!"


If you'd like to set up your own fundraising event, email Ashley@alsphiladelphia.org

 

 

Forever Kirkin It
2/10/2015

When our dad Roger Kirk put his name to a cause, he never did so casually. Roger’s whole life has been about diving in head first. That was especially true when he was diagnosed with ALS in 2013. From that point on, Roger attacked the disease with the same attitude that energized everybody around him.

 On February 6, 2015, Roger’s fight against ALS sadly came to an end. He is survived by his wife of 35 years, Maryanne, his five children (Tim, Ryan, Joey, Jenny & Diana), two daughters-in-law (Melissa & Kaitlyn), and two grandsons (Johnny & Brady).  He is also survived by his mother (Nancy), his three siblings, and many sisters-in-law, brothers-in-law, nieces, nephews and friends. 

Our dad lived with ALS for such a short time, less than two years from being diagnosed, but in that short time, he inspired many people every step of the way. Anybody that knew Roger shouldn’t be surprised at how he attacked this disease. It’s that same optimism and zest for life that made him a success as a businessman, community leader and, most importantly, as a husband, father, and grandfather.

If you only met Roger since he got involved in The ALS Association, you would be forgiven for not knowing all of the great things that we have seen him accomplish in his life. After attending Archbishop Wood High School, where he made friends that lasted his whole life, he went on to graduate from Villanova University, and then became a Villanova basketball season ticket holder since 1986. Like we said, when he commits to something he cares about, he really commits!

Roger later joined Corpus Christi Parish in Lansdale, PA in 1988, where all five of us attended grade school. Just as with everything else good in his life, dad was a very active member of the parish, volunteering on the Parish Council, the Finance Committee, and as Athletic Director and President of CYO. He was definitely a great example for us as we grew up and we saw all that he was doing in our school and church. In 2011, dad joined the Board of Mercy Vocation School, the only Catholic co-educational vocational high school in the country and helped in many fundraising efforts. 

Dad was an avid golfer and member of Old York Road Country Club in Spring House, PA where he golfed on a weekly basis with many of his dearest friends.  During his tenure at OYRCC, Roger served as Chairman of the Membership Committee, First Vice President, and eventually the President of the Club.  

In addition to all of this work in the community, dad founded and was president of CNI Sales, Inc., a Worcester-based IT networking reseller. To say he made the most of life would be putting it mildly.

  

 All this serves as prologue for our dad’s fight against ALS starting in 2013. After the life he lead, and the people he befriended every step of the way, our dad never had to fight this disease on his own. He attacked ALS with the same passion and intensity that defined his life. Since his diagnosis, his fundraising team, Team Kirkin’ It, has raised more than $300,000 for the ALS Association Greater Philadelphia Chapter through its participation in the annual Walk at Citizen’s Bank Park and a golf outing named after Roger. He was surrounded by friends, neighbors, and colleagues on every part of this difficult journey.

With all that he had in his life, the most important thing to Roger was his family. Since 2005, he spent summers down in Sea Isle City, NJ with the open door policy “All are welcome.” That’s where we did our Ice Bucket Challenge this summer. As cold as that water was, we were always warmed by the love and support we had around our dad at every moment.

 From the start, our dad said “ALS is not who I am, it is what I have.” He was a husband, father, grandfather, son, brother and friend.   He also lived his life by the Golden Rule – “Treat others as you would like to be treated.” This was evident in each conversation and relationship he had, even as he worked his way through this terrible disease. 

Roger gave us so much in his life, and in addition to the countless happy memories that we will cherish forever, he gave us that honest and humbling example of how to live by the Golden Rule. We have a tremendous appreciation for everybody who is touched by ALS or similar difficulties in life and when we see someone with this disease, we know it is what they have, not who they are. That is because ALS is a terrible disease and Roger may have lived with something terrible, but he was the complete opposite. He was the most wonderful person we could ever hope to call dad.

Forever Kirkin’ It,

 

Tim, Ryan, Joey, Jenny & Diana

 

Mark Your Calendar: Walk to Defeat ALS® Season Is Here!
2/4/2015

This June will mark the third year that Vickie Mitsdarfer’s family has participated in the Walk to Defeat ALS. It also coincides with the third anniversary of her husband’s heartbreaking ALS diagnosis.

The Mitsdarfer’s will join together with friends and family to walk with the hope that one day a cure can be discovered. Her 10-year-old son, Gavin who she describes as “a very cool and outgoing kid,” will lead the family’s fundraising efforts to support The Association’s Greater Philadelphia Chapter. In years past, Gavin and his friends have gone door-to-door selling homemade sandwiches and even their own artwork. Their efforts have raised hundreds of dollars and vital awareness for this disease that impacts as many as 30,000 Americans at any given time.

Beginning in late February, Walk to Defeat ALS events will take place in communities across the country. More than 180 Walks are scheduled to take place through November. The Walk draws people of all ages and athletic abilities coming together to honor a loved one with the disease, to remember those who’ve passed and to show their support for the cause.

Mitsdarfer encourages those whose lives have never been touched by ALS to consider getting involved, “Because you never know. ALS could strike your family or friends anytime. Because there is no cure, we need everyone who can to walk.”

More than 150,000 participated in Walks to support The ALS Association and its mission last year. The events raised more than $32 million in support of care services, scientific research and public policy efforts at the federal, state and local levels.     

 

“Whether you walk as a member of a corporate team, or with family and friends, these events provide an important opportunity to raise awareness and bring those touched by ALS together with the common goal of supporting our mission priorities. These priorities include care services, advocacy, and research to find treatments and a cure. Our chapters are here to support all families living with ALS,” said Barbara J. Newhouse, President and CEO of The ALS Association.

To join the Mitsdarfer family at the Hershey Walk to Defeat ALS on June 6, visit www.hersheywalktodefeatals.org and to find a walk near you, visit www.gpcwalktodefeatals.org

Watch The Chapter's Walk Year in Review video here:

 

 

 

Pulling in Your Passion
12/23/2014

Pulling in Your Passion is a book about inspiration, hope and direction. 

Inspiring Author Drew Bycoskie has dedicated his life to helping individuals and organizations to identify and pursue their passion or purpose in life.  This uplifting guidebook is created by an exceptional life coach which contains unique yet simple strategies about how to identify and unleash your deeply hidden passion or purpose, regardless of your business or personal circumstance.  A life with purpose and passion will provide meaning, fulfillment and direction. When you are living your life purpose and “Pulling in Your Passion,” you are expressing the very essence of who you are. 

Drew’s life experiences as a father, playing on two National Championship football teams and working for two Fortune 100 Companies has fueled his passion for helping others to achieve and fulfill their life passions.  This insightful book offers an accumulation of inspirational quotes, real life experiences and interviews with five remarkable and purposeful individuals.  One of the book participants and close friends of Author Drew Bycoskie is Steve Smith, former NFL Los Angeles Raiders fullback and ALS sufferer.  Steve was initially diagnosed with ALS back in 2002 and to this day, he fights this debilitating disease with great courage, determination and tenacity. 
    
Over Steve’s remarkable life, he has served many purposes and passions.  As the NFL premier lead blocker for Hall of Famer Marcus Allen and All-Pro running back Bo Jackson, Steve played the game of football with great passion, purpose and determination. As a father, husband and son, Steve Smith is passionate in these roles and dedicated to being the best he can be.  Today, Steve’s life purpose has expanded to being an inspirational and brave role model despite his debilitating ailment.  The courage, selflessness and meaningful journey that Steve is currently embarking upon is providing great strength and motivation to others that have witnessed his battle in fighting the ALS disease.      

If you are lucky enough to pursue and pull in your passion or purpose in life, you will enhance your life which ultimately will provide greater meaning, fulfillment and direction. The majority of the purposes or passions that we elect to pursue are under our own free will and volition.

In Steve Smith’s case, his latest purpose of providing inspiration and strength to many is not under his own volition. Despite this undeserving role, Steve has selflessly and bravely embraced this new purpose with enthusiasm and vigor for the benefit and well being for so many other people.  I can assure you that my good friend Steve Smith has made the mental decision to look at his life as the glass as half full.  Being thankful for what you have and pursuing your life purpose with enthusiasm, vigor and excitement is key and critical in living a fulfilled and meaningful life.  
     
This book is dedicated to promote awareness and financial support for the fight against ALS.  A portion of each book sale will be donated to the ALS Association. 

Pulling in Your Passion is available on Amazon.com.  Click here to order. Thank you for your time and support.

Sincerely,

Drew Bycoskie
Dbpsu25@comcast.net 

Colby's Crew
12/10/2014

Craig and Kristen Colby say that they saved each other. Neither could have imagined the hurdles they would face, but those challenges only made their love stronger.

In the comics, Charlie Brown desperately wants to be with the Little Red Haired Girl. He’d give anything to just get a Valentine from her. Sometimes life plays out better than art. In 1992, Craig Colby, then at an all- boys high school, was playing the role of Charlie Brown in the school play. A young Kristen Halaszi from a neighboring school was in the play as the Little Red Haired Girl. It was an experience that Craig would not forget.

However, life first imitated art. Charlie Brown did not end up with the Red Haired Girl… at least not yet. Both Craig and Kristen went on their separate ways. Craig, originally from the Boston area, graduated and went on to be a manager at a number of pizza restaurants. A friend had moved to Hawaii to run a videography company and encouraged Craig to come out to see opportunities there. Craig’s father had recently passed away and he was feeling burnt out, so he took up the offer and moved.

Craig began to get “‘island fever”’ in 2002 and thought about life back on the mainland. He was watching a video of that Charlie Brown musical with a friend and said “I wonder whatever happened to that girl.” That led to Craig going online and finding Kristen.

Back on the other side of the country, Kristen was also busy with her own life changes. She was living in Delaware and working as a flight attendant, a job that had become more exhausting and stressful after the terrorist attacks of 9/11. Getting back in touch with Craig was a spark that lifted her up just when she needed it most. “I had gone through a bad break up, 9/11 changed everything at work, and my grandmother had just passed away,” said Kristen. “Craig saved me. He made my life whole.”

The relationship began with the two talking online and on the phone, sometimes for up to six hours in a day. Kristen’s flight attendant schedule was always changing, so the time difference was actually a benefit. After a few months, Craig decided to move to Delaware in February of 2003. He soon began working at the Texas Roadhouse restaurant and quickly moved up to management.

Kristen and Craig married in 2004. Life found a way to work out. Charlie Brown finally got the fairy tale ending with the Little Red Haired Girl.

Of course, it wasn’t an ending. Life went on happily as the two grew together, got a dog together, and travelled the world together. Then came a new challenge Craig and Kristen would have to face, ALS. But, like everything else, they knew they would face it together.

Craig’s ALS story began on his birthday in 2007. He had purchased a gym membership and, on his  first day at the gym, a trainer helped him learn about the equipment. When the trainer told Craig to lift a weight over his head, he could not do it. It was a baffling sensation for a young man who had just finished a golf tournament and was in otherwise good health.

What follows next is a series of events that many ALS families will find familiar. There were months of tests, doctor visits and specialists, various diagnoses, and drug treatments, followed by uncertainty from top medical professionals. After all of the tests and confusion, it was Kristen who was the first to make a guess at her husband’s problems. “I had just read Tuesdays with Morrie,” said Kristen. “And I thought, what if it’s ALS? When we went met with Dr. McCluskey at Pennsylvania Hospital in 2008, I just knew what we would hear.”

“Then Dr. McCluskey said ‘Ok, what do you want to do?’ We decided right away that we weren’t going to let ALS take us down. We just had too many plans.”

Right away those plans included fighting ALS – together. At that first clinic visit, they learned about the upcoming Walk to Defeat ALS® and within weeks they raised $9,000 for Colby’s Crew. That quick success energized them both. It was Craig and Kristen against the world.

Thankfully, Craig and Kristen soon realized that they would not be in this fight alone. Following the Walk to Defeat ALS®, they attended the annual Hot Chocolate event, where they met people like Wes Rose and Gary Temoyan who shared their stories. Friends rallied to their side and The Texas Roadhouse restaurant also provided support for Craig to work as long as he physically could, which ended in August 2009.

Those friends also were by the Colbys’ side when their house suddenly burned down on St. Patrick’s Day 2009. Craig knew just how to ease the tension when he turned to her and over a dozen of their friends said, “Who brought the marshmallows?”

“After that, I knew it would all be OK,” said Kristen.

Since then, Kristen and Craig have defied the odds to make sure every day is better than OK. Once an excellent golfer, Craig is now in a power wheelchair and needs mechanical assistance to speak and breathe. Yes just as they wouldn’t let a house fire burn the life they created together, the Colbys won’t let ALS beat them.

In 2014, Craig and Kristen found new hope in the ALS Ice Bucket Challenge.. They did the challenge multiple times, using the social media phenomenon to sell over 120 shirts for their Walk to Defeat ALS® team. The Challenge also gave them an opportunity to educate others about the disease, make new friends, comfort others, and direct people to services at the Greater Philadelphia Chapter.

This year was made even more special when Craig surprised Kristen and they renewed their wedding vows at Citizens Bank Park before the Greater Philadelphia Walk to Defeat ALS®  commenced on November 15. Every day this Charlie Brown and Little Red Haired Girl find new reasons to take on the world together.

“Craig may have ALS, but he’s smarter than ever, funnier than ever, and is still remarkable to me,” beamed that red haired girl, Kristen.


Winter 2014/2015 Blogs

A Leadership Conference Report

Introducing New Chapter Board Members

Happy Birthday Mr. Denman

Forever Kirkin It

Mark Your Calendar: Walk to Defeat ALS Season is Here!

Pulling in Your Passion

Colby's Crew


 

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002
215-643-5434

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.