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Why We Walk - Team Souf
10/29/2014

By Deb Soufleris


Our ALS story started like many others.  My sister-in-law, Beth, noticed she was slurring her words.  It was subtle but I have to admit I did notice right away.  I have no sisters- but have been blessed with sisters through my brother and brother-in-laws.  Our families are extremely close. 

Beth and her husband Phil began the long pursuit of a diagnosis to uncover what was afflicting her.  About 14 months later, the diagnosis was delivered.  Beth had ALS.   I have to say I feared many diagnoses but this one never crossed my mind. This was September of 2013, a day I will never forget as our reality was forever changed.  Very few diseases offer no hope.   How could this be true?  Beth was barely 54 years old and so healthy and active.

My niece and I decided to move into action. Standing still let our thoughts turn dark, so getting busy was our only option.  We came up with the name Team Souf, and with the blessing from Beth, Phil and her children our team was born.  The walk was only 6 weeks away so we didn’t have much hope of being a top fundraiser but every day the notifications kept coming.  I was blown away!  We had over 100 walkers by walk day!  Of course all the Soufs showed up from many corners of the country but also friends of Beth and Phil, so full of love and fight, came and brought their families too.  My nephew, then a junior at Virginia Tech, showed up after a 9 hour drive with 8 friends!  My niece’s boyfriend’s family showed up – parents, cousins, aunts etc.!  We were overwhelmed by the support both in their presence but also in their donations.   In a matter of 4-6 weeks, we were able to raise over $10,000!

I know the attention was uncomfortable for Beth.  The diagnosis was so new.  She hadn’t really absorbed it all yet…didn’t want it to be true… seeing her name associated with the cause was making it more true.  But on walk day, being surrounded by 100 people all wearing a bright blue shirt emblazoned with our name that united us…TEAM SOUF….Let’s Kick Some ALS, really was empowering.  We had a banner made and walked over 100 strong, all in honor of Beth.  So we walk to find a cure.  We desperately want a cure- want a world without ALS.  But also- walk day is about being together that day- so she and all those with ALS know that we care, that we will fight, and we will support. 



I have been captain of many teams (tennis, dragon boat, other fundraisers etc.) and find uniting and communicating with folks for a common cause fun and fulfilling.  This team is very personal to me of course.  Every minute spent is for Beth and I would do ANYTHING for her. 



We really enjoyed our 2013 Walk to Defeat ALS® and are looking forward to 2014 too at Citizens Bank Park on Saturday, November 15.  It is very well organized and being surrounded by so many that really know what Beth is going through, and what we are going through as people that love her, has a comforting effect.   I was worried initially that it would be upsetting. Seeing the reality of what Beth has in front of her is a scary thing.  But is just wasn’t.  That is not say we didn’t see people in the many stages of ALS.  Of course we did, and the number of names that were shared in memory is daunting as well.  But we are taking a step to make the future different for these folks and hopefully our Beth and it was AMAZING!

My primary goal honestly is to bring my family, friends, friends of my family, etc. together united in cause and spirit for Beth.  As you know, this disease is very isolating.  Beth is non-verbal now so large groups are too difficult.  Eating is such a challenge that it no longer can be done is public.  She fatigues and shakes and just can’t do the things she wants or that she was doing not that long ago.  So on November 15th, Team Souf will be together wearing our team colors with hearts full of love.  Now- if we raise some money that is going to move this fight forward that is a good thing too!

The support from family and friends is awesome.  I have friends that I haven’t seen in years that sent money to Team Souf over the summer from the ALS Ice Bucket Challenge and even made a shout out to Beth and Team Souf as they poured the frigid water over their heads.  I had an old high school friend make a donation that her company matched 7 times!!!! So please remind folks how important that company match can be!



My 13 year old nephew is fighting his own fight right now.  He was recently diagnosed with a brain tumor.  I was sitting with him out front of Children’s Hospital where he resided for over 5 weeks.  He brought up the Ice Bucket Challenge.  He was remembering last year at school he wore his TEAM SOUF shirt to school and another 7th grade boy asked him what was “ALLZ” mispronouncing the A.L.S.  He looked at my wisely and said- “ya know, I bet he knows what ALS is NOW.”

Join Team Souf and all of the awesome teams at the 2014 Greater Philadelphia Walk to Defeat ALS at Citizens Bank Park. Sign up today at www.greaterphiladelphiawalktodefeatals.org

Cruising to Fight ALS
9/19/2014


The ALS Association Greater Philadelphia Chapter, in collaboration with Justine & Mark Del Rossi, Vacation Specialists/Franchise Owners CruiseOne, Sewell, NJ are pleased to offer you a new way to receive great rates and value added amenities on cruise and land vacations.  A portion of the proceeds will be donated to ALS Association Greater Philadelphia Chapter - Click Here for Details

 

OUR DAD.....OUR HERO
9/15/2014

OUR DAD.....OUR HERO

When we learned of our Dads diagnosis of ALS...it was one of those moments in time we will always remember.  We felt frozen...as if time was standing still.  We felt numb, loss of all senses, hopeless and lifeless...sitting together starring into oblivion...not being able cry, breath, talk or feel.  We felt helpless knowing there were no words of hope or encouragement that could be offered to "our Hero".  How do you offer your loved one hope when he is has been diagnosed with ALS, the ugliest, cruelest disease that anyone can imagine?  It is a nightmare that no human being should have to endure.

Our family had a friend pass with ALS thirty years ago, so we were all very aware of this horrific disease and what our dad would have to endure and so he also knew what was coming.  As a family, we reached deep down into our souls and collectively pulled on our strength in order to face the struggles ahead.  We needed all the strength we could gather to care for our Dad, just as he had always been there and cared for us. Throughout it all, our dad remained our hero because of the strength and character he showed even in the most difficult of times.

He was a veteran and was always concerned about other People with ALS and their families that did not receive the level of care that the government provided for him.   He became a strong ALS Advocate, spreading public awareness and raising funds for research and patient care.  As he progressed, he needed more and more care, then finally 24/7 care. Yet, through it all, we always saw his incredible spirit and his love of family that extended to all others in his life. ALS robbed him of his body, but that also drove him to continue his advocacy as long as he could.


He was not supposed to be confined to a bed, unable to move, feed himself or breathe without a ventilator.  The strongest man in the world to us was now so helpless.  It was heartbreaking to watch him breakdown because he was no longer able to care for his family.  All we could do was hug him and love him, assuring him that we would stay by his side.  After all, he was always by our side, no matter what. My sisters and I took family leaves to help our mom with his care and to make the final chapter of his life as loving, comfortable and as meaningful as possible. 


There are so many challenges with ALS that you can really prepare yourself to handle. Imagine having your daughters changing and bathing you.  Dad seemed to take it all in stride.....or maybe his happy face was a facade that he used as a coping mechanism.  We surrounded him with love and made many memories that we will treasure and hold in our hearts forever.  Even in the hardest of times, we could all be strengthened by the love for each other that always lifted us.


It has been a year since he passed.  Now we try to allow our good memories to overpower the ugly ones, but the cruelty of ALS is very difficult to suppress.


The horrific pain also affects young family members very much.  His young grandsons had trouble in school because they were overwhelmed by the loss of their grandfather. Now they, like us, want to see a cure so that other families, and other grandchildren, don’t have to see somebody suffer with this disease.


Throughout this ordeal, we have learned that there is a great need for more support for people with ALS and their families.  My family wants our government to understand the pain, hurt, devastation and financial disaster that these victims and families go through and to understand that ALS is debilitating and cruel, as well as physically, mentally, and emotionally draining.


Close your eyes for a few seconds and try to imagine what it would be like to watch your loved one suffering with this disease.  How would you feel not knowing if your loved one might be hungry, thirsty, need to be repositioned, in pain or struggling with something as minor as having an itch that he can’t scratch? We take these things for granted, but your loved one has lost his ability to verbally express his needs or perform any of them for himself because his muscles are wasting away at a rapid speed and he is becoming more paralyzed every day.  To make all of this even worse, people with ALS are aware of what is happening.  They become locked in his own body.


With our government’s help, we have the opportunity to get much needed awareness and support for ALS.  Since this disease does not affect millions of people, most people in this country will never have to endure the heartache and struggles that ALS families are not able to escape. As a result, ALS does not get the recognition that it deserves.  Our Dad, our Hero, is no longer with us to continue to fight for himself and others and to tell you personally what he has gone through, but we, his family, will do our best continue his "legacy" and do all we can to help support future victims and families.  We have a chance to be heard.  We will be strengthened by his energy, his love, and his amazing character. Please...we desperately need continued and increased funding for the ALS Research Project at the Department of Defense, the ALS Registry, passage of the MODDERN Cures Act and support for quality patient care. 


In order to get members of Congress to listen and understand, we need all ALS families to tell their stories. Talk to your elected leaders. When our dad talked to his Representatives, they listened, and now we make sure that they hear from us as well.



Sharing your story makes a difference. If people like our dad did not share their stories, we wouldn’t be talking about increasing funding for programs. Instead, those programs wouldn’t exist at all. Your stories matter because you matter. Just like our dad matters so much to us, you matter to somebody else. Our dad encouraged others to let their stories shine so that they could help others and we promised to continue his fight and to do the same in asking you to make a difference.
 

Dad...we love you and miss you and will hold your memories in our hearts forever. And we will beat this disease.


With loving hearts,

The daughters of Frank Gabrielli.

 

The Gabrielli family will be participating in the 2014 Ocean City Board...Walk to Defeat ALS. Join them on Saturday, September 20 or find a walk close to you at www.gpcwalktodefeatals.org

Toast to a Cure for ALS
9/3/2014

By now, most people have heard of the ALS ice bucket challenge that is sweeping the globe. But, what about the champagne challenge? This ALS fundraiser involves a partnership between the ALS Association Greater Philadelphia Chapter and Tendil & Lombardi Champagne.


Prior to the countless Facebook videos of people dousing themselves with ice water, people and families living with ALS in the Philadelphia area were also using ice buckets to fight ALS. But, they’re not dousing; they’re drinking. They found chilling champagne in their ice buckets to be a preferable way to help raise money to fight Lou Gehrig’s disease.


So, how did this partnership come about? In the summer of 2009, Dr. James Madden of Blue Bell, PA was diagnosed with ALS. As Dr. Madden’s condition worsened, his daughter, Carol, along with her husband, Stéphane Lombardi, champagne producer and owner of Tendil & Lombardi Champagne in France, were inspired to contribute to the Philadelphia chapter’s mission of helping families living with ALS.


In the summer of 2013, just months before Dr. Madden passed away, Stéphane and Carol met with the ALS Association Greater Philadelphia Chapter. As a result, a portion of proceeds from every bottle of Tendil & Lombardi Champagne sold in the U.S. go directly to support the fight against ALS.


“Watching how my dad approached life with the many challenges of ALS was an invaluable lesson to me and everyone around him,” Carol says. “No person with ALS is able to suffer this disease alone, especially as it progresses. The support my family received from the ALS Association was overwhelming; we wanted to give something back.”


Stéphane and Carol hope that people will purchase Tendil & Lombardi Champagne to not only toast a cure for ALS, but to help them fund that goal.  


About the ALS Association Greater Philadelphia Chapter:


The mission of The ALS Association Greater Philadelphia Chapter 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.


The ALS Association is the only national not-for-profit organization dedicated solely to the fight against amyotrophic lateral sclerosis. The Greater Philadelphia Chapter provides support and resources for ALS patients, their families, and caregivers living in the eastern half of Pennsylvania, southern New Jersey and Delaware.


To learn more about the partnership, visit: http://www.alsphiladelphia.org/champagne

About Tendil & Lombardi Champagne
Founders and childhood friends, Laurent Tendil and Stéphane Lombardi, unveiled their first champagne cuvees in the spring of 2011. Strong character, elegant balance, and complex aromas are all recognizable character traits.
 
To learn more about Tendil & Lombardi Champagne, visit: http://www.tendiletlombardi.com.


Fall 2014 Blogs 

Why We Walk - Team Souf

Cruising to Fight ALS

Our Dad...Our Hero

Toast a Cure for ALS

 


 
 

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.