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news g r e at e r p h i l a d e l p h i a c h a p t e r

“NEVER ALONE.

together IN HOPE.”

Summer 2013

Jimmy Rollins has a great time with the Delaneys at this year’s Phillies Phestival.

INSIDE:

Phillies Phestival raises $860,732 to strike out ALS!

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early 7,000 excited fans descended upon Citizens Bank Park on Thursday, May 16 for the 24th annual event. Fans of all ages had a chance to be up close and personal with their favorite Phillies players and coaches, creating memories that will last a lifetime. The Phillies have raised over $14.3 million for the fight against Lou Gehrig’s Disease since the Chapter became their principal charity in 1984 and they are already preparing for another great event next year. Everybody in the Phillies organization played a role in making the Phestival a success. Phillies players, wives, coaches, broadcasters, front-office members, ball

Way To Go ALS Advocates! pg.5 Walks to Defeat ALS® pg. 9 Paul Shymansky, A Man To Call On pgs. 8-9

girls, volunteers and the Phanatic all worked hard to make the day run smoothly. The support from the Phillies over the years has made it possible for ALS families to get the best in quality care and for The ALS Association to be able to devote more funding to research into the cause of Lou Gehrig’s Disease and possible treatments. We are happy to be on the same team in the fight against ALS and look forward to our 25th Phestival in 2014. Thank you Phillies!


Defeat ALS® every September on the boardwalk. And then of course there is baseball, not just baseball, but Phillies baseball. This too has been a favorite past time since I was a little girl. Baseball was always part of our family, as I watched for years both of my brothers play baseball from the time they were seven years old all the way through high school. And then there was my Dad who I believe was the best Phillies fan ever. Sandy Piersol (right) with Karen Delaney Shideleff

Chair, Board of overseers

Sandra Piersol I am very excited to be writing my first article for this newsletter as Chairman of the Board of Overseers. I became very familiar with the ALS chapter when my brother Dennis Bireley was diagnosed with ALS in March of 2002 and eventually lost his battle in November of 2005. I have always said “I meet some great people for all the wrong reasons.” If my brother was never diagnosed I would have never met all the wonderful people who make up the Greater Philadelphia Chapter of ALS from staff to volunteers to my fellow Board members. I joined the board of Overseers in January 2006 and then the Trustees in 2009. At that time I never even dreamed that I would eventually be following in the footsteps of our beloved Ellyn Phillips but here I am doing just that. Prior to taking over the role of Chairman of the Board in February, I had the great opportunity to be Chair-elect and learn from Ellyn. Everyone who knows Ellyn knows that I have big shoes to fill. I am very fortunate that Ellyn has not gone anywhere and is still very powerful in the fight to find a cure for ALS. I want to thank Ellyn for all she has shared with me and for her incredible dedication to the cause as she continues to be a great mentor and friend. As we immersed in the summer season…. Summer tends to be my favorite time of year spending as much time as I can on the beaches of Ocean City, NJ where I vacationed with my family as a little girl. It happens to be home of the Ocean City Board…Walk to

So, it is so ironic that Dennis was diagnosed with a disease named after the great baseball hero Lou Gehrig. And our family’s baseball heroes, the Phillies, do so much to help The ALS Association. So for me, it has been a very natural fit to become involved with The ALS Association. Furthermore, my entire professional career has been in healthcare. I bring over 30 years of healthcare experience to the board in the areas of operations, strategy, compliance, homecare, durable medical equipment and insurance reimbursement. I am fortunate to be working with a great group of dedicated board members along with Jim Pinciotti and staff who all have our mission in their hearts. I want to thank all the board members who have served on our board over the years and look forward to working with you and thank you for your vote of confidence in being your leader. I want to end with some words from a song a dear friend of mine wrote while struggling with his own health issues who passed away on my birthday twenty-two years ago. It is called “Celebrate Life” ….Celebrate life; it’s for living, don’t give up; never give in, Celebrate life, don’t take it for granted ….. Just make sure you leave your mark before you go…. I dedicate this to my loving parents and my best friend and brother who left their mark on this world. I, too, hope to make my mark on this world by helping families like mine who have a loved one who has been diagnosed with ALS. I plan to be a leader to a great group of board members and together we will raise funds for research and patient services. I look forward to meeting as many of you as possible and working with you all to strike out ALS.

Enjoy your summer!


Executive Director Jim Pinciotti How can we ever truly thank the Phillies for all that they do for The ALS Association and the fight against Lou Gehrig’s Disease? In case you didn’t know, we have been privileged to be the principal charity of the Phillies since 1984! Each year, the Phillies through their Phillies Charities entity, hold the largest single fundraising event the Chapter has – The Phillies Phestival. This year, more than 7,000 fans descended on Citizens Bank Park on May 16th to meet the players and coaches, take photos, get autographs, play games and generally have a good time. Hall of Famer Mike Schmidt was there too! This year the Phestival raised over $860,000 that will help us continue to provide help and hope to families living with ALS in our region. It was a spectacular event on a wonderful day. Seeing the faces of the kids, young and old, as they meet their heroes is a highlight of the day for me. Another highpoint is walking around the Park to personally thank each of the members of the team for their dedication and commitment to our Chapter and our cause. This year, I had an experience that I will remember (and re-tell) for many years. One of our good friends, Kevin Glenn, lives with ALS and uses technology to communicate. Because ALS often robs people of the ability to speak, the Chapter provides assistance through our Scott A. Mackler, M.D., Ph.D. Assistive Technology Program. With the use of an ‘Eye-Gaze’ computer, Kevin “talks” with his eyes. That is, using his specialized apparatus, he can create a message by looking at the letters he wants to type then have the computer speak the words. A few of the Phillies players and coaches had the opportunity to see Kevin in action and were amazed and intrigued. One in particular, Ryan Howard, really took an interest and spent time understanding how it worked. As important and satisfying as it was to see the players reach a new understanding of one of the difficulties that ALS brings, my memory will always be of Ryan Howard stopping in his tracks as Kevin told him via his communication device – “Yo, Ryan! Lay off the high heat!” Bless you Kevin, my friend! For more information on the Assistive Technology Program or to make a donation, see our website: www.alsphiladelphia.org There’s another friend I’d like to take a moment to bless, and that is my wife Pat. continued on page 4

BOARD OF DIRECTORS Chair, Board of Trustees Jeffrey L. Abrams, Esq. Chair, Board of Overseers Sandra Piersol Chair Emeritus, Board of Trustees Benjamin S. Ohrenstein, Esq. Chair Emeritus, Board of Overseers President Ellyn C. Phillips Vice Chair Patricia M. Lake-Quinn Secretaries Sandra Piersol Christina Martin Treasurer Bruce Berkowitz Assistant Treasurer Julie Strong Karnavas Rhoda Albom Gila Aviram Michael Barkann Dominick Bartone Julie Charlestein-Benjamin Holly Bennett Bradley A. Bingaman, Esq. Ellen Brosso

Suzanne Bruce Tony Burns Marcy Cardonick R. Douglas Carpenter Ted Collins Konnie Crawford Ann Cutler Laurence J. Delaney Karen Delaney Shideleff Michele DeVicaris Arthur R. Ersner, M.D. Ellen B. Farber Deborah Ann Ferreira Lawrence Finkelstein, Esq. Nancy Giles Robert Goudie Thomas H. Hipp David Kasoff Frank J. Kelly James R. Koller Robert A. Korn, Esq. Sheila Lessin Leonard M. Lodish Melissa Ludwig JoAnn Marano Kathryn A Meloni, Esq. Scott Nickle Doug Proctor David M. Ricci Michael Rifkin Raymond Rose Wesley Rose Lisa Schwab Suzanne Shorten Janet Unger Gerard Voit Lauren Stevenson Yacina

Summer 2013 Table of Contents From the Executive Director....... page 3 Research Update...................... page 4 ALS Advocates.......................... page 5 Past Events.............................. page 6 Past Events & Walks.............pages 7-8 Patient Profile......................pages 8-9 Past Events........................pages 9-11 Upcoming Golf Outing............. page 11 Giving 12 For 1 Club...................... page 12 2 new Named Funds............ page 12 Goodbye Susan & Rebecca...... page 13 Volunteers & Resource............ page 14 In Memoriam......................... page 15 SAVE THE DATE Calendar of Events................ page 16

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Research Update ALS Association-Supported Study Shows Combining Two Growth Factors May Have Advantage in ALS Treatment May 31, 2013 A study published in the scientific journal Molecular Therapy, which was supported by the Wisconsin Chapter of The ALS Association and led by University of Wisconsin at Madison researchers, shows in ALS that two growth factors may be better than one. Growth factors are proteins produced by one set of cells in the body that help promote the health of other cells. Previous work has shown that both VEGF (vascular endothelial-derived growth factor) and GDNF (glial-derived neurotrophic factor) can promote the survival of motor neurons in models of ALS. Motor neurons are the cells that die in ALS and lead to paralysis. “This study provides support for the idea that delivering growth factors to muscle may be beneficial in ALS,” said Lucie Bruijn, Ph.D., Chief Scientist at The ALS Association. “Further work will be needed to explore this option, but it has the advantage of being less invasive than delivering the same growth factors to the spinal cord.”

Ben Ohrenstein learns about research from Lucie Brujin, PhD.

Masatoshi Suzuki, Ph.D., and colleagues tested whether the two growth factors together could provide more benefit than either alone. These researchers engineered stem cells to produce both growth factors and then injected these cells into the muscles in a rat model of ALS. The combined treatment increased lifespan and improved features of the motor neurons at the point where they contact muscle. On May 13, Lucie Bruijn, PhD., Chief Scientist at The ALS Association and James D. Berry, MD, MPH, Unit Chief at Massachusetts General Hospital spoke in Philadelphia about improving understanding and expanding treatment horizons in ALS. Scientists are making significant progress in understanding the potential causes of ALS in both the familial and sporadic forms as well as new directions for possible treatments. You can watch video of Dr. Brujin’s presentation and learn more at www.alsphiladelphia.org/research

Executive Director Jim Pinciotti continued from page 3 This year, Pat & I celebrated our 38th wedding anniversary while surrounded by over 7,000 friends. While we may not know all 7,000 of the Phillies fans by name, they are certainly friends in our quest to defeat ALS. Being with Pat at the Phillies Phestival was a reminder that our families are never alone in the battle against ALS. While I’m proud of the support we provide through our clinics, our in-home care program, assistive technology, durable medical equipment, and groundbreaking research, moments like these are a strong reminder of how important it is for us to make sure people are able to spend time with their families as well. We talk a lot about how we are together in hope, but we are also together in love and support for one another, even in the face of a terrible disease. I hope that you get many opportunities to spend time with your families this summer. If you get a chance to be with your family at a Phillies game, make sure to tell them thank you!


Way to go ALS advocates!

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In Washington and in our state capitols, our advocates have made a tremendous difference in the fight against ALS.

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The Greater Philadelphia Chapter had the largest contingent at this year’s National ALS Advocacy Day in Washington with nearly 50 allies making the journey. We heard from speakers like Steve Gleason and O.J. Brigance and convinced many members of Congress to support funding for the ALS Registry and the ALS Research Project at the Department of Defense. In Pennsylvania, two dozen advocates from our Chapter joined our friends from the Western Pennsylvania Chapter for our Harrisburg Advocacy Day, presenting awards to Senator Pat Vance and Representative David Millard. After hearing from our families, the legislature increased funding for our ALS patient care services line item to $350,000! In New Jersey, Assemblymen Troy Singleton and Herb Conaway presented a proclamation for ALS Awareness Month and made the case for funding ALS patient care.

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In Delaware, Governor Jack Markell offered his support to to young advocate Kayla Wilson and her family in the fight against ALS.

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Clockwise from top left: 1. State Senator Pat Vance with Helena Snyder; 2. Carol Resides (front) with Amy Minnich, Janet Hubbard, Alice Lahoda, Representative Rob Andrews, Kelly Almasy, Jim Pinciotti Mary Kelley, and Jennifer McKenna; 3. Kathleen Gaumer, Bonnie Bowen, Shelley Hill, Kathryn Thomas, Chriss Delaney Cohen, Representative Matt Cartwright, Leo James, Karen Delaney Shideleff, Kathy Delaney Thomas, and Tony Heyl; 4. Dave Ihde, O.J. Brigance, Debbie Ihde; 5. Dave Ihde, Representative Mike Fitzpatrick, Debbie Ihde; 6. New Jersey advocates meeting Assemblymen Herb Conaway and Troy Singleton; 7. Representative Rush Holt with Tom Phelan and his wife Karolina, Alice Lahoda, Janet Hubbard, and Susan Schwartz; 8. (Front) Representative Chaka Fattah and Wes Rose (Standing) Suzanne Shorten, Ellyn Phillips, Ray Rose; 9. Chrissie Delaney Cohen, Karen Delaney Shideleff, Kathy Delaney Thomas and Representative Charlie Dent; 10. Delaware Governor Jack Markell meets with Pam White, Kayla Wilson, Eric White, Mary Lou Allen and Mary Ann Wollter; 11. Stephen and Charlotte Potter, Dave and Debbie Ihde, Representative Jim Gerlach, and Maureen McPeak

Your voice can make a difference.

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Visit www.alsphiladelphia.org to learn more.

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PAST EVENTS Lakewood BlueClaws Celebrity Waiter Event

Joe Schwartz April 28, 2013 The Joe Schwartz ’83 Memorial 3k Walk/Run held at Haverford College really upped their goal this year – and of course they worked hard to meet it! This year’s event raised over $7,000 for The ALS Association Greater Philadelphia Chapter. The day couldn’t have been better, with near perfect weather and a great turnout. A big thanks to event coordinator Cory Walts for all of his hard work to ensure this year’s event was the most successful yet.

On May 29th, Lakewood BlueClaws players and coaching staff swapped their bats and gloves for serving trays at the 13th annual Lakewood BlueClaws Celebrity Waiter Event to benefit The ALS Association at T.G.I. Fridays in Brick, New Jersey. Fans BlueClaws manager Mickey Morandini and Jim got to meet their favorite players and DeAngelis, team director of community relations, coaches who served as waiters and with T.G.I.F Manager Suzanne Bimonte bartenders for the night. This year’s event raised $6,500. Brian Pointer had the highest tip of the night and the best selling auction item was the Ryan Howard autographed bat, which went for $400. Special thanks to Jim DeAngelis and the entire BlueClaws organization for their support of The ALS Association.

LeSean McCoy Fights ALS by the Yard!

CrossFit for Casey May 4, 2013 In memory of her mother, Erin Comollo put together the first ever CrossFit for Casey event in association with the Kathleen “Casey” Santye Memorial Fund which helps fund The Greater Philadelphia Chapter’s important patient care programs. The event was held at CrossFit Stealth in New Brunswick, NJ and thanks to wonderful weather, it had a really great turnout! We look forward to this event in years to come.

LeSean McCoy spoke with Kevin Glenn at Chickie’s and Pete’s restaurant

“We are grateful to have LeSean McCoy as a champion for people with ALS,” said Greater Philadelphia Chapter Executive Director Jim Pinciotti. “Through his leadership and the generosity of supporters who joined his team to Fight ALS by the Yard, families living with ALS know that they are never alone and that together we can defeat this

terrible disease.” In its first year, Fight ALS by the Yard raised over $15,000 and LeSean has also raised thousands more for ALS patient care through his celebrity softball game in Lancaster, PA. On April 9th, running back LeSean “Shady” McCoy joined supporters and families living with Lou Gehrig’s Disease to thank them for participating in the Fight ALS by the Yard Program. The program, made possible through the support of PJ’s All Natural 100% Beefsteak and Yards Brewing Company, raised funds for research and community-based patient services programs for people living with ALS. You can learn more about how to Fight ALS by the Yard at www.alsphiladelphia.org

Step Up to the Plate for ALS Wednesday, May 1, 2013 What better way to kick off ALS Awareness Month than to eat out for our great cause? Hundreds of supporters cover all the bases did just that on Wednesday, May 1st as they Stepped Up to the Plate for ALS at fifteen participating restaurants in our region. From casual dining at Joe’s Crab Shack in King of Prussia to fine dining at Heirloom in Chestnut Hill, there was something for everyone at this restaurant fundraiser. Diners shared photos, “checked in” on Facebook, and spread the word that they were dining out for ALS. Your happy bellies helped us raise almost $3,000 and counting for the fight!


Walks to Defeat ALS®

Seaside Board… Walk to Defeat ALS®

Bloomsburg, Jorge’s Walk to Defeat ALS®

Hershey Walk to Defeat ALS®

Saturday, May 11, 2013

Saturday, May 18, 2013

Saturday, June 1, 2013

Walk Fast Facts

Walk Fast Facts

Walk Fast Facts

Total Raised - $90,000 # of Walkers - 875 # of Teams - 46

Total Raised - $57,000 # of Walkers - 550 # of Teams - 25

Total Raised - $257,000 # of Walkers - 2,500 # of Teams - 90

Top Three Teams On Walk Day: 1st Place: Steadie Eddie’s Squad 2nd Place: Carlson’s Roughriders 3rd Place: Spences for Hire

TOP THREE TEAMS ON WALK DAY: 1st Place: Paul’s Steel Curtain 2nd Place: Steve’s Steelers Strive to Take Down ALS 3rd Place: Team Dustin

TOP THREE TEAMS ON WALK DAY: 1st Place: John’s Crew of Hope 2nd Place: Simpson’s Steamers 3rd Place: Hershey Clinic Best Care Anywhere

Other Fundraisers included:

Other Fundraisers included:

Other Fundraisers included:

Top Rookie Team: Steadie Eddie’s Squad

Top Rookie Team: The Rac Kuhns

Top Rookie Team: Simpson Steamers

Top Individual Fundraiser: Mark Carlson

Top Individual Fundraiser: Connie Yurczyk

Top Individual Fundraiser: Deborah Ferreira

Top Youth Fundraiser: Paige Taylor

Top Youth Fundraiser: Sydney Fidler

Top Corporate Team: Team BAYADA: Seaside

Best Team T-Shirts: The Rac Kuhns

Top School Team: Angel Annie

Best Team Sign: Butch’s Memory Walkers

Presented by Cleveland Brothers

Top Youth Fundraiser: Julia Ferreira Top Corporate Team: Cleveland Brothers

WE THANK OUR Walk to defeat als® SPONSORS NATIONAL PARTNERS: Permobil, Pride Mobility, Quantum Rehab Presenting Sponsors: CertainTeed Corp., Cleveland Brothers, Pride Mobility, ShopRite & Their Customers Air Products Atlantic City Electric Bayada Home Health Care Bennett Auto Group

Dynamic Rehab Solutions, LLC HotHotHot Entertainment HOVUS, Inc. Lehigh Valley Dairy Farms

Lehigh Valley Health Network Lehigh Valley IronPigs Turkey Hill Dairy UTZ

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Patient Profile:

Paul Shymansky a man to call on Bubba, Root, Pauly Allen, Dad, Pappy. Husband, brother, hunter, mechanic, friend. It doesn’t matter what you call Paul, he has always been there to answer. Whether you were stuck on the side of the road with a dead engine, building an addition to your house or needed a hand dragging a monster of a buck through the woods, Paul was always there. He’s the guy you know will drop everything to come help his friends and family, and now that role is reversed. Paul was diagnosed with ALS in April 2010 at 47 years old. Married to his wife, Diane, for 32 years, they have three adult children, Tiffany, Jennifer and William and seven grandchildren. And the list wouldn’t be complete without acknowledging perhaps his favorite “children,” Blaze and Sadie, his two Shelties that are by his side every day. For a man who has worked with his hands and been an avid hunter his entire life, it couldn’t have been a worse diagnosis. But he didn’t let it stop him; he got up bright and early on the start of hunting season. And

he continued to go out each morning, with the help of his buddies, until he determined it was no longer safe. No one takes hunting safety more seriously than Paul, and he would never put himself or his friends at risk. His friends know how hard of a decision this was for Paul and have promised that he will always have a freezer full of deer meat no matter what. Paul and Diane also decided to throw a big party to celebrate their 30-year wedding anniversary. They invited all of their friends and family and had a great time. They also took a trip with their good friends Scott and Virginia to South Dakota to continue the celebration. If you know anything about Paul, it’s that he hates flying, so this was a big deal. They always wanted to make it out to the mid-west and decided now was the time to make it happen. They saw Mount Rushmore, Crazy Horse, Custer State Park and crossed into Wyoming to see Devil’s Tower. Paul then got on a plane (again!) in 2011 to see his youngest daughter,

Paul’s Steel Curtain at the 2012 Bloomsburg, Jorge’s Walk to Defeat ALS®

Paul with his wife and kids on Coronado Island in 2011.

Jennifer, get married on Coronado Island, California. It was an intimate, family-only celebration and the first time in a long time that Paul and Diane had all three children sleeping under one roof. Those are the memories that will last a lifetime. This past May, they were overjoyed to celebrate their son William’s wedding. William has been there for Paul and Diane, always just a phone call away for any help they need. Having his father at his wedding means everything to William. It’s hard to turn the tables when you’ve always been the one everyone could count on. Paul was a loyal employee at Berwick Offray for 28 years, working his way up from a stock clerk to mechanic


We all need a Paul in our lives Far Left; Chase Utley with Paul and Diane at the Phillies Phestival Left; Diane and Paul at their 30-year wedding celebration in 2010.

supervisor. There wasn’t a more dedicated and dependable employee. Berwick Offray has stood by Paul and Diane, not only by acting as a corporate sponsor for ALS events, but twice sending them to the ALS luncheon in Philadelphia, where they met many wonderful advocates for the cause. Although Diane has taken on the role of Paul’s primary caregiver, she continues to work full-time, also with Berwick Offray, in an effort to keep up with the immense financial strain a disease like ALS causes. Luckily they have a team of support behind them:

Dr. Friedenberg and the staff at the ALS Clinic at Geisinger Health South in Danville, PA., their ALS nurse, Jen LaRegina and ALS social worker, Mary Beth Tomczak have been there from the start, answering any questions and offering advice and assistance. They have repeatedly gone out of their way to help make day-to-day life a little easier. The Greater Philadelphia Chapter’s Patient Care Services have been extremely helpful, including the Abrams In-Home Care Program, respite care, the Marjorie Shimer Equipment Program, support group, home visits from caregivers, and the Cox Fund for Accessibility

that helped with home ramping. As a huge Steelers fan, Paul gathers his own “Steel Curtain” each year to participate in the annual Bloomsburg, Jorge’s Walk to Defeat ALS. The team has raised over $30,000 in the past 3 years, including $11,658 this May, making them the first place team! (see below) The walk is so important to bring people together, increase awareness and raise research funds to get closer to a cure. We all need someone that who can call on in times of need. We all need a stable support system. We all need a Paul in our lives.

PAST EVENTS

The Phelan Family taking a break to refuel during our Family Trip to Longwood Gardens!

Longwood Gardens April showers brought beautiful flowers for our Family Trip to Longwood Gardens on Sunday, April 28th. Dozens of families came out on a lovely day to enjoy the scenery and delicious lunch hosted by Scott and Beth Glassford. Guests got to explore one of the great gardens of the world and experience the tranquility of the beautiful scenery while getting to know each other!

Matt Doroshow and some of the 4 on 4 for a Cure team

4 on 4 for a Cure February 28-March 7, 2013 This year’s 4 on 4 for a Cure basketball tournament was the most successful yet – raising over $6,000! The students and faculty at Colonial Middle School in Plymouth Meeting, PA rallied together to raise not just money but awareness for ALS and have some fun while they were at it. The basketball tournament lasts an entire week as the 7th and 8th grade students compete for the title. A big thank you to Matt Doroshow, who plans and manages the whole event, in honor of his aunt and father, both of whom lost their lives to ALS. 1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org

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PAST EVENTS

Hot Chocolate: A Chocolate Frenzy

The staff of BAYADA Home Health Care poses in front of the Adventure Aquarium’s Shark Tank. Always a popular event, this year saw our first ever sell out! In addition to the wonderful vendors who attend the event the evening was made possible by the generous contributions of our sponsors: Biogen Idec, BAYADA Home Health Care, 95.7 Ben FM, Adventure Aquarium, Ballard Spahr, Cooper Electric, Sonepar, The Rudoler Family, cheapSneaks, Griswold Home Care, Butera Beausang Cohen & Brennan, Friedman Electric, Kaplin Stewart, Line Systems, Inc., Providence Legal Center, TriValley Primary Care and Sage Financial Group.

Congratulations to Cakes and Candies by Maryellen the winner of the 2013 Chocolate Frenzy Award for the vendor who had the most pleasing display. This is Maryellen’s third win. Other participating vendors included: Addie’Cakes, Albanese Confectionery, Azteca Mexican Candy, Barefoot Wine & Bubbly, Blommer, Cakes & Candies by Maryellen, Charles Jacquin et Cie., Inc., Christopher Chocolates, Colby’s Gourmet Confections and Pretzels, Crazy Susan’s Cookies, Cupcake Fantasy, Deliciously Different Fudge, Dorothy Cox Chocolates, Dove Chocolate Discoveries, Giambri’s Quality Sweets, Godiva, Goldenberg Candy Co., Good Choice Healthy Vegan Options, Guittard, HOT HOT HOT Entertainment, Iron Hill Brewery & Restaurants, Kellbran Candies, Inc., Kelly’s Kandy and Nuts, Lehigh Valley Dairy Farms, Mark Avenue Chocolate, Mary Sue Fine Candies, Philadelphia Distilling, Pirate’s Booty, Plantations Candies, Starbucks, Tastykake, The Chocolate Executive, Turkey Hill Dairy and Wilbur’s of Maine Chocolate.

Volunteers at The ALS Association can be counted on to do anything – even scoop ice cream at Hot Chocolate! In addition to our wonderful volunteers the event would not happen without the hard work and dedication of the event committee, led by chairs Larry and Jill Kaplan and their committee of Ted Collins, Deb Fineran, Dawn McEleney, Kathryn Meloni, Kelly Rose, Suzanne Shorten and John Whitner.


Not only did guests sample some of the best chocolate but they enjoyed the music of Hot Hot Hot Entertainment, heard the inspirational words of the night’s speaker, Bob Janssen, participated in a treasure hunt with two VIP tickets to next year’s event as the prize, enjoyed massages courtesy of CAREcenter of South Jersey and posed for pictures in the cheapSneaks Photo Booth. Ben 95.7’s Marilyn Russell and WMMR’s Kathy Romano served as the evening’s hosts. The event raised more than $76,000. Rhoda Mull with friends and family enjoying Hot Chocolate

Bartone Rugby

May 4, 2013

This year’s Scrum for Six Michael Bartone Rugby Event was, as always, a huge success. The weather was perfect which made for an ideal turnout and perfect rugby playing atmosphere. There were a number of teams participating along with a solid fan base there to cheer on the players. We look forward to the Michael Bartone Memorial Dinner Dance and Golf Outing to be held September 6th and 7th.

Gospel Sing

May 18, 2013

The 2nd Annual Doll Klinger Memorial Gospel Sing took place in Tower City, PA at the Porter-Tower Lions Club. The event included singing, dancing, food, drinks, an auction, raffles and games for kids to make it a family friendly afternoon! All the money raised came back to our Chapter in memory of Doll Klinger. We look forward to next year!

Chilly Chili for Paula

March 23, 2013

This year’s Chilly Chili for Paula event proved to be a big hit, raising nearly $6,000 in honor of Paula Goldstein. Her friends and family work hard to put together this event for everyone to let loose and enjoy a good time with good food! Between the chili, cornbread, silent auction and drinks, this event never disappoints and raises money for a great cause! You can see video from the event on our Youtube page at www.Youtube.com/ALSPhiladelphia

Paula Goldstein and members of her family

Upcoming EVENT

ALS Association Golf Outing Monday, September 30th, 2013 Old York Road Country Club, Springhouse, PA $250/player or $900/foursome $50 grand hors d’oeuvres / Auction Only Registration 11:00 AM / Shotgun Start 12:00 Noon

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In picture from left to right: Frank Koppenbarger, Greg Gross, Scott Gross, and Scott Palmer

Contact Julie McKeever at 215-643-5434 or Julie@alsphiladelphia.org for sponsorship and registration information.

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12 for 1 Club. 12 ways to accomplish 1 goal:

A world without ALS. Join The ALS Association Greater Philadelphia Chapter’s 12 for 1 Club and you will play a significant role in achieving a world without Lou Gehrig’s Disease. You automatically become a member of the 12 for 1 Club when you make a monthly commitment to the Chapter. You’ll be amazed how quickly your monthly donations add up to a larger gift, helping ALS families every day. It’s also so convenient for both you and the Chapter – you save time and the Chapter saves time and money in gift processing. It’s the green way to give! “I met my wonderful friend Mike through wheelchair bowling. I am a double amputee from the Vietnam conflict. Mike’s courage fighting ALS inspired me and I wanted to help in some small way. The Chapter’s monthly giving program is perfect for me. I don’t have to remember to make a payment - my gift is automatically withdrawn – and my contributions over time can make a difference in the lives of people living with ALS. God Bless Mike and all those living with this dreadful disease.” – David Roberts

“My husband passed away from ALS 25 years ago. I know how valuable the Chapter’s programs are for patients and families living with this dreadful disease. I am an 87 year old woman living on a fixed income. The 12 for 1 Monthly Giving Club option allows me to make a larger annual donation to help those who are battling Lou Gehrig’s Disease, one month at a time. – Janet W. MacNamara

Please call Donna Cleary at 215-643-5434 or visit www.alsphiladelphia.org/12for1 to help create a world without ALS. Just look at what 12 months membership will accomplish: • $10 • $20 • $35 • $50

each each each each

month month month month

provides a lightweight wheelchair will provide 12 hours of in-home care provides patient with 1 visit to an ALS Association clinic provides a special I-Pad tablet to help communicate

The Chapter is pleased to announce the addition of two Named Funds: The Bruce “Turk” Gabel Memorial Fund was established by Bruce’s siblings, Scott Gabel and Doreen Spencer. The fund benefits the Chapter’s Patient & Family Services Program.

The Rhoda J. Mull, Esquire, Fund has been established by Ms. Mull, a grateful recipient of the Greater Philadelphia Chapter’s services, to support the Chapter’s Research Program.

To make a gift to these or any of the Chapter’s Named Funds please visit www.alsphiladelphia.org/NamedFunds. If you would like information about how to establish a Permanent Named Fund please contact Jeff Cline, Chief Development Officer, at 215-664-4127 or jeff@alsphiladelphia.org.

An Easy Way to Create a Legacy of Hope – Your IRA Since you first started working you’ve been regularly reminded about the importance of saving for retirement. Now you may find that your retirement savings are more than adequate. Because retirement plans are taxed differently than most assets, they may actually become a tax liability. Donating all or part of a retirement plan to The ALS Association Greater Philadelphia Chapter may be an attractive option that can help reduce estate taxes and result in a larger overall inheritance for your loved ones. For more information please contact Jeff Cline at 215-664-4127 or jeff@alsphiladelphia.org.


GoodBye Rebecca Pace (far left) and Susan Schwartz (center) saying hello to Ryan Howard

Saying GoodBye to Susan & Rebecca The Greater Philadelphia Chapter wouldn’t be where it is today without the unbelievable efforts of our hard working staff. This month, we say goodbye to two members of our staff who have made positive impacts on every aspect of our Chapter’s fight against ALS. Susan Schwartz is retiring from her career as social worker at our Chapter after 13 years of service. In addition to guiding families after diagnosis through a maze of insurance and patient care needs, Susan has also been a strong voice for advocacy by showing every person with ALS that even if they could no longer speak, they still had a voice. Susan approached every family with compassion and understanding and used every resource at her disposal to make sure that people with ALS were empowered to make the best choices every step of the way. Events Specialist and Volunteer Coordinator Rebecca Pace is moving to the Pacific northwest with her

husband. Since joining our staff, Rebecca has created our successful Community Ambassador Program, grown our volunteer outreach efforts, and organized Walk to Defeat ALS® events for Rehoboth, Bloomsburg, Hershey, and Greater Philadelphia. We wish her luck in her new adventures. “Susan and Rebecca had very different roles at the Chapter, but one thing they share is a commitment to all of our ALS families,” said Executive Director Jim Pinciotti. “Rebecca made amazing strides with our volunteers and the Walk to Defeat ALS® which helped make our Chapter successful and I am proud that Susan has been a face for our Chapter by meeting every family with kindness. We are a better organization because of both of them.” You can read more about Susan and Rebecca at www.alsphiladelphia.org

Young Friends of the ALS Association Young Friends Beer Taste and Tour of Yards Brewing Company, Thursday, April 25, 2013 25 Young Friends spent the night tasting and touring around Yards Brewing Company in Philadelphia on April 25th. They saw how beer was brewed, filtered, carbonated, and bottled right on the spot – and then tested the beer in Yard’s own tasting room while enjoying food and billiards. It was a great night for beer lovers and ALS supporters!

Join us for our Young Friends Phillies Game on August 6th at Citizens Bank Park. Email Ali@alsphiladelphia.org for details

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Volunteers OUR VOLUNTEERS MAKE THE DIFFERENCE. We need your help to set up events, send mailings, and to represent our ALS community. To get involved, contact Ali Nielsen at ali@alsphiladelphoa.org today! Sydney and Riley Kaplan, their mother Jill and Dawn McEleney did an amazing job working the sales table at this year’s Phillies Phestival.

Lori’s Hands is a student-run volunteer organization out of the University of Delaware which has been in helping individuals with chronic diseases since 2009. They assist with day-to-day tasks such as grocery shopping, yard work and light cleaning. Recently, they supported Bonnie Mills and Ron Wenger, who are living with ALS. Bonnie said “We look forward to having the students come out to visit.” Ron recently retired and has been returning the favor by assisting the students with class projects and educating some of the students in the College of Health Sciences at the University about ALS. These amazing students have created new connections and friendships and we’re glad to have them on our side.

Resource Groups

T

his is a general listing of our Resource Groups. We warmly invite people with ALS, and their families and friends, to attend. Please call the contact person for each group to confirm actual dates, or you may request to be placed on the Resource Group mailing list. This mailing is distributed quarterly and lists upcoming dates, times, and other important information. Also, be sure to RSVP to the facilitator, if specifically requested.

Bereavement - Ambler, PA A five-session series is available for people who have lost someone to ALS in the past 2 years. Info. & RSVP: Jennifer Klapper 215-726-8724 Caregivers & Family Members - Ambler, PA Bi-monthly Info. & RSVP: Karen Dawson-Haines 215-487-4519 Men as Caregivers- Ambler, PA Info. & RSVP: Brenda Edelman, LCSW, BCD 215-643-5434 For Women Only (Women with ALS)Ambler, PA Info. & RSVP: Jennifer Klapper, RN, MSN, CNS-BC 215-726-8724

Caregivers & Family Members - Brick, NJ Info. & RSVP: Patricia Schaeffer, RN 732-239-4724 or Kathy Valentino, LCSW 609-433-6333 Cherry Hill Support Group - Cherry Hill, NJ Info. & RSVP: Jennifer Klapper, RN, MSN, CNS-BC 215-726-8724 Delaware - Wilmington, DE Info.: Wendy Strowhouer, RN 302-547-8482 Harrisburg - Hershey, PA Info. & RSVP: Judy Lyter, LPC, RN 717-566-1700 Lehigh Valley - Allentown, PA Info.: Wendy Barnes, MSW, LSW 610-797-2102

Lancaster, PA Info. & RSVP: Joan Groh 717-278-8866 jgroh3@comcast.net Monmouth/ Ocean CountyRed Bank, NJ Info.: Patricia Schaeffer, RN 732-239-4724 or Kathy Valentino, LCSW 609-433-6333 Northeast PA Resource Group Bloomsburg, PA Wilkes-Barre, PA Info.: Jennifer LaRegina, RN 570-436-4529 Williamsport, PA Info.: Judy Deacon, B.A. 570-436-4529

Please go to www.alsphiladelphia.org - Patient and Family Services for additional information about all Resource Groups.


IN MEMORIAM

Patricia Weikert

Helen Beyerl

Jerome Broussard

Richard Doran

Marlene Emory

Mary Simpson

Paul Wensel Jr.

Jean Chrapek

Benjamin Lisenby

Ronald Boltz

Bernard Medei

Darren Foltin

Lidia Orellana

Joseph Umosella

Charle Costanza

Mostafa Nsioui

Mary DeLemmo

Domenic Greco

Marla Bonetti

Marshall Cabe

Mary Colgan

Theodore Pokorny

Jacqueline Carrell

Joan Tarloff

Eleanore Villani

Ruth Zaluski

Lawrence Jerz

Drucilla Miller

David Walker

Dorothy Johnston

Rodman Finkbiner

Elaine Stockmal

Robert Balentine

Teodoro Ferrer

Colleen Morrow

Carl Querengasser

John Nuciglio

Rudolph Schuster

Michael Wilson

William “Russ” Murphy

Sandra Neal

Thelma Steele

Robert Bower

Jack Povoa

Ruth Stewart

Frances Farrar

Robert Blakenhorn

Janet Bucklew

Marie Hinkel

Stanley Ogryzek

John Manz

April Koonsman

Attilio Gentile

Joseph Kmet

Eleni Margarites

Michael Friedhofer

Stacey Kirkpatrick

John Mitch

Victor Salter

Stephen Polles

Mary Anna Eichelberger

Donna Zambrana

Phyllis McCool

Philip Herman

Jonathan Slott

Nanette Hart

William Hall

Patricia Martin

Virginia Krobath

Rafael Bernardino

Lillie Carter

Nicholas George

Daphne Adams

Kathryn Tibbens

Mary Darden

Donna Fake

Carle LaCouture

Carol Long

Donald Graybeal

Wesley Sensenig

Germane Williams

Douglas Lore

Lorraine Rees

Doris Clark Roger Hauck

Raymond Hubbard

Anthony Miller

Larry Beaver

Analisa DeFilippo

Willard Wheaton

Thomas Glendon

Edward Leonard

Theresa Hoffman

Joseph Delfini

Professional Staff EXECUTIVE DIRECTOR James V. Pinciotti

STAFF NURSE Maureen Reid, RN, BSN

IT Director Nora Isaac

DIRECTOR OF PATIENT SERVICES Brenda Edelman, LCSW, BCD

REGIONAL NURSE COORDINATORS Gail Houseman, RN, APRN, MSN Jennifer LaRegina, RN Sue Walsh, RN, MSN, CS

DATABASE Manager Heather Pecharo

CONTROLLER Andrew G. Lash, CPA CHIEF DEVELOPMENT OFFICER Jeff Cline Annual Giving Manager Donna Cleary Communications and Public Policy Manager Tony Heyl MENTAL HEALTH NURSES Jennifer Klapper, RN, MSN, CNS-BC Connie Eriksson, RN, CNS-BC

DATABASE Coordinator Alexandra Weaver DATABASE SPECIALIST Victoria Hamilton

SOCIAL WORKERS Wendy Barnes, MSW, LSW Melissa Coll, MSW Shelley S. Hill, MSW, LCSW Maryann Jones, LSW, MSW Susan Schwartz, ACSW, LSW Mary Beth Tomczak, BSW

ADMINISTRATIVE STAFF Evelyn Thoman Patient Services Assistant

Events Director Allison Walker

Maryann Vagnoni Executive Assistant

EVENTS MANAGER Julie Morrison McKeever

TRANSPORTATION VAN DRIVERS John Conner Thomas R. Mitchell Gerry Neal

CLINICAL MANAGER, ASSISTIVE TECHNOLOGY SERVICES Alisa Brownlee, ATP

EVENTS & VOLUNTEER COORDINATOR Ali Nielsen

NURSE COUNSELOR Judy Lyter, RN, MS, LPC

EVENTS SPECIALIST Ashley Hendrix

DATA ENTRY SPECIALIST Jayme B.D. Powell

OFFICE MANAGER Erin Farrell

DEVELOPMENT COORDINATOR Joan Borowsky

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The ALS Association (Lou Gehrig’s Disease) Greater Philadelphia Chapter 321 Norristown Road, Suite 260 Ambler, PA 19002-2755 phone 215-643-5434 toll-free 1-877-GEHRIG-1 www.alsphiladelphia.org

NON-PROFIT ORG. U.S. POSTAGE

PAID

PERMIT NO. 215 WEST CHESTER, PA 19382

Our mission is to lead the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.

This Issue We thank & salute OUR SPONSORS • Hand Surgery and Rehabilitation Center • Kessler Topaz Meltzer & Check, LLP • Macy’s • PSA Healthcare

Save the Date for UPCOMING EVENTS 8/3-8/4 2013 ALS Auction Weekend at Camden Riversharks Camden, NJ 8/6/2013 Young Friends Phillies Game Citizens Bank Park 8/10-8/11 2013 Chinese Auction Pottsville, PA 8/17/2013 Wipe the Tears 5K Lewisberry, PA 8/24/2013 3rd Annual Amazing Scavenger Rally Elizabethtown, PA 9/6-9/7 2013 Bartone Golf Outing & Dinner Dance

9/14/2013 Rehoboth Beach Walk to Defeat ALS® The Bandstand at the Boardwalk Rehoboth Beach, DE 9/21/2013 Ocean City Board… Walk to Defeat ALS® Presented by CertainTeed Corp. & ShopRite and Their Customers 6th Street Athletic Complex Ocean City, NJ 9/30/2013 Greg Gross Golf Outing Old York Road Country Club Springhouse, PA 10/12/2013 Billy Lake ALS Basketball Marathon Haverford College Haverford, PA

10/19/2013 Lehigh Valley Walk to Defeat ALS® Coca-Cola Park Allentown, PA 10/27/2013 Mackler 5K Temple Beth El Newark, DE 11/3/2013 Greater Philadelphia Walk to Defeat ALS® Citizens Bank Park Philadelphia, PA 11/15/2013 Annual Luncheon Loews Philadelphia Hotel Philadelphia, PA

FOR MORE INFORMATION ON ALL OUR EVENTS, VISIT www.ALSPHILADELPHIA.org

Follow The ALS Association Greater Philadelphia Chapter on Facebook at www.Facebook.com/alsphiladelphia and on Twitter @alsphiladelphia

ALS Philadelphia Summer 2013 Newsletter  

ALS Philadelphia Summer 2013 Newsletter