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Cujo's Defensive Line

by Leigh Johnson

When my father, Curtis Johnson, was diagnosed with ALS earlier this year, my family and I immediately went into “we have to do something” mode. We aren’t ones to sit back and let things progress without doing something. My parents both are active in their community and I certainly got the “let’s make things happen” gene from them.

The day after my father was diagnosed with ALS by Dr. Simmons at Hershey Medical Center, I was driving back to Philadelphia from my parents home in Williamsport, PA, completely distraught about the news. I saw the Phillies Instagram post about their Ice Bucket Challenge and, in that moment, I had a little glimmer of hope. Just knowing that there were people taking action and working to do something about this disease put me a little bit at ease.

Then, the more I researched, the more that I found that there are so many people doing what they can to raise awareness and funds to provide support to families dealing with ALS. I know that I wanted to take part. Many people have stepped up and asked ‘What can we do?” and “We want to help, just tell us how.” Our family felt that the Walk to Defeat ALS® would be a great first step to get involved with the ALS community and to support the Chapter that supports us.

As soon as we decided to walk, Team CuJo’s Defensive Line was born and the name took off in my parents’ community. My father was an athlete his whole life and the team name sends the message that “We’re a team, we’re here for you, we support you, and we are going to protect you.” Dad was born and raised in Williamsport and has always been very  involved with athletics, including being a coach and the current Booster Club President for the local high school.

For a man who has always supported everyone else, we are all now supporting him in his fight. And we need you to join too!

We will have nearly two dozen friends and family members, including my mom Barbara, walking with us on November first at Citizens Bank Park in Philadelphia. I can’t say enough about all of the people who have donated and who are joining us. Your support blows me away. The walk will be the first of many events where you will see CuJo’s Defensive Line, tackling ALS!

Click here to support the Walk to Defeat ALS with your donation today.

Team Souf and ALS Avengers

When it comes to fighting ALS, you can’t tell the Soufleris family no. Even if you try, they won’t listen. Instead, everyone in the family will find new and better ways to raise money and awareness for ALS care and research.

In 2013, after her sister-in-law was diagnosed with ALS, Deb Soufleris went into action and started a Walk to Defeat ALS® team. She organized the family, brought friends on board, educated her neighborhood, and designed some great team shirts. One year later, in 2014, Team Souf had over 110 people on the team. They also had new team items like fun scarves and a bright sign to make sure everyone knew that they were on a mission to end ALS.

Deb’s daughters Julia and Grace wanted to find their own ways to get involved to make the team a success. Julia had a lot of great friends at her high school and got 47 classmates interested to join together to start an ALS Awareness Club.  The group has a walk team for November and has started working on a 5K fundraiser for the spring.  Their goal was to educate people about ALS, raise money, and connect young people who are affected by ALS in their families. Julia decided to name her club The ALS Avengers.

Even though the school did not sponsor the club, Julia, Deb, and the Soufleris family banded together like superheroes any way. They ordered shirts and Julia got her friends to help make home made signs to highlight the facts about ALS and about how people can help. They have multiple fundraising activities planned for the next two weekends leading up to the Philadelphia Walk to Defeat ALS.

“The walk is such an inspiring day for all of us,” said Deb. “Julia’s friends are so supportive and they always have great experiences on walk day. They want to volunteer in every way that they can.”

Julia isn’t the only family member finding new ways to raise money in 2015. Grace, Deb’s other daughter, is coming home from college to be at the Walk on November 1. However, Grace isn’t just helping on Walk day. She reached out to her former employer, Jules Thin Crust Pizza to see if they would get involved. Jules Thin Crust Pizza was more than happy to say yes and set up a special pizza day on October 22nd where proceeds would benefit the fight against ALS. Not only did Jules Thin Crust Pizza say yes, but they extended the generous offer to three locations in North Wales, Doylestown, and Newtown, PA from 4:00 PM to 8:00 PM when a guest mentions The ALS Association or ALS Avengers.

The whole Soufleris family is coming out in full force for this year’s Walk to Defeat ALS®. Deb is excited to see family coming from Florida, New York, Ohio, New Jersey and more to be on hand for the walk. The young people are making their own designs and taking ownership of the walk. As Deb sees it, ALS can make you feel powerless, but she is determined to make everyone feel empowered through the walk.

It isn’t just family that is feeling the energy behind the walk this year. Deb’s childhood friend in Chicago donated money in support of Team Souf.  When she asked her company about matching gifts, they didn’t just write a check, they matched her gift eight times to show their appreciation for the cause.

Deb started Team Souf to support her sister-in-law, and that is still the top priority, but she is proud and excited to see how her family and friends have rallied to the cause to pass all of her expectations. Her daughter Julia’s ALS Avengers team, along with her co-coordinators Julia Czmar and Danielle Purcell, all sophomores at Council Rock High School South in Bucks County, is doing more than Deb ever dreamed. As the energy grows every year for the Soufleris Walk teams, Deb has reason to feel hope, reason to keep going, and reason to know that one day, we will be able to defeat ALS for good.

Obie's Angels

By Larissa Garman

On Saturday, October 17, my family is ready to put on our walk shirts, tie our shoes, and head to Coca-Cola Park for the Lehigh Valley Walk to Defeat ALS. This event is very important to all of us. ALS runs in my dad's family. We have lost several family members, including our aunt and grandfather, and we live life fearing that anyone could be next.

The Walk to Defeat ALS reminds us that you can't live your life with fear. You have to live with hope! Walking every year not only reminds us that we all still can walk, it also reminds us that the money collected gives the hope that we will all still be walking for many, many years to come. It gives us a chance to educate friends and people outside of our family when we invite them to donate and join our team.

Please join the walk or even support our team, Obie's Angels. Learn more at

Common mistakes to avoid in making a testamentary charitable gift.

By William F. Schroeder
Member, Planned Giving Advisory Council
ALS Association Greater Philadelphia Chapter

Charitable remainder trust. Even a foundation. There are many ways to leave a legacy of charitable giving.  But after over four decades in a law practice which included a steady stream of drafting estate planning documents, I can tell you that the most common device used by those who want to leave something behind for their favorite charity is a specific bequest in their last will and testament.

Sounds simple, right? You just tell your lawyer how much and which charity you want to name and s/he inserts a simple clause in your will giving it to that charity. And it is generally simple, but there are a few pitfalls which you and the drafter of your will should be careful to avoid.

First, be specific. Suppose you tell your lawyer, "My spouse and I each want to leave X dollars to ALS." That is commendable. But which ALS? Is it the national organization or did you mean a local ALS Chapter? If you meant local, which one? You or your lawyer should check with the charity to get their exact name and even an address so there is no ambiguity. For example, the will clause might read something like: "I give and bequest the sum of X Dollars to the ALS Association Greater Philadelphia Chapter, presently located at 321 Norristown Road, Suite 260, Ambler, PA." You will find that any reputable charity is happy to provide you with this information. Avoiding ambiguity is helpful to them too.  In fact, many will provide you with sample language which gives the exact name. By the way, I use the "presently" before the address since charities, like anyone, can move. The address is in there for description of the beneficiary only. 

The need to be specific can be very important for certain kinds of charitable bequests. For example, hierarchical churches have specific canon rules about ownership of church assets. A while back I was involved in a highly publicized trial involving a bequest of a large and valuable tract of land to a Catholic parish in suburban Philadelphia. In that religion, canon law holds that title to church real estate shall be in the name of the Archbishop. Pennsylvania civil law will follow canon law if not otherwise improper. In that case the local pastor entered into a lease-purchase with a third party without the consent of either the executor of the estate or the Archbishop. After lengthy litigation, including a trial of several days, and a lot of publicity, the transfer by the pastor was set aside. As you can imagine, the cost to the estate and intended beneficiary was large. The trouble, expense and embarrassment could have been avoided by a properly worded bequest to the Archbishop with a direction that the land be used for the benefit of the local parish instead of just an outright gift to the local parish.

Second, be sure the charity is actually in existence   A few years ago, an executor came to me with a will which left a small monetary bequest to an environmental education center.    We were able to identify the center the decedent intended based on information from surviving family members.  The problem was the center was no longer run by an independent organization but by a local university.   So to whom should the executor make payment?   The university?  Another local education center?   Resolving the problem meant involving the Pennsylvania Attorney General's office, which has oversight of gifts to charities to ensure that the charitable intent is carried out and protected.    In this case, we were able to persuade the Attorney General's office that the best option was a gift to the university for the use of the center.    As you can see, a lot of expense, which ultimately cost the principal heirs money, need not have been spent.

Finally, be sure the "charity" is a charity.   Think of the situation where a friend or neighbor or their family is saddled with high medical or other bills due to an injury, illness or some other problem.    Often, fundraisers or similar events are organized with the salutary intent of helping those in such need. You might be tempted to leave something in your will to help the person in such a situation. An outright specific bequest to that person or their family will be honored.   However, it may not be recognized as a charitable gift by the Department of Revenue in calculating the amount of inheritance tax due. If the person is not a spouse, descendant, ancestor or sibling of the decedent, there will be inheritance due of 15% of the amount of the bequest to or for that person. A good way to avoid that possibility is to be sure the intended beneficiary of your gift is recognized as a charitable, educational, scientific or similar institution by the IRS, usually under section 501(c)(3) of the Internal Revenue Code. Again, this is a fact which any reputable charity will be happy to confirm. You can even check directly with the IRS if you or your will drafter want.

So, a specific bequest to a charity is indeed a simple thing.   Just be sure to keep it simple by following the above rules.


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

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