Wednesday, May 15, 2019

May 2019 Volunteer of the Month Fran Carlson

May 2019 Volunteer of the Month

Fran Carlson

In 2003,  Robert Carlson was diagnosed with ALS. The next year, his wife, Fran, wasted no time and captained the first Carlson’s Roughriders team at the Chapter’s  Seaside Walk to Defeat ALS. The disease crashed over her family as harshly as waves crash over the Jersey Shore. Over the past 15 years, Fran has remained a powerful force in the fight to defeat the disease that took her husband’s life shortly after that first Walk.  

Initially,  Fran had no idea how much of a  toll ALS would take on her family, or if she would have the strength to endure it. However, after the Carlson’s Rough Riders’ first Walk, and the loss of her beloved husband, Fran remains steadfast in her mission to defeat ALS. 

The Seaside Walk to Defeat ALS became a family tradition for the Carlsons. In addition to forming a team, fundraising, and participating in the walk, Fran became an integral part of the Walk committee. For 15 years, Fran has been at the helm of the Walk, planning details  with  Chapter staff and volunteers and recruiting new teams. In 2004, Fran began walking for her husband. Today, she she walks in unison with everyone affected by ALS.

“I remember one year walking along the boardwalk when a young man asked what we were doing and why everyone was wearing team shirts,” remembers Fran. “I told him about my husband and the walk, and he donated $20 in cash right there. It is a moment that we’ll never forget. Later, I donated $20 to a team that was walking in honor of  a 19-year-old who had been diagnosed with ALS and since that time, each year, I continue to donate a little extra to another team. It all stems from a kind stranger on the boardwalk.”

In 2012, Super Storm Sandy horrifically damaged Seaside Heights and surrounding areas in New Jersey. The committee was unsure when, how, or if the walk could continue on the Boardwalk. But Fran and other volunteers knew that, if they were as strong as the ocean waves that destroyed their beloved boardwalk,  they had to be even stronger than that storm had been. Seaside is close to Lakewood, NJ and the Lakewood BlueClaws, Class A Affiliate of the Philadelphia Phillies, had been participating in the Walk for several years.  Jim DeAngelis, the team’s Community Relations Vice President had a solution – The BlueClaws ballpark became the new site for the  2013 Walk to Defeat ALS. The new location was met with support from the Carlson family and all walkers. Consequently, the Walk continued its success. 

The new site in Lakewood brought new teams and ALS families to the walk. When a newly diagnosed person with ALS came to the walk by themselves, Fran invited him to join Carlson’s Rough Riders.  To her, everyone at the walk was part of the same family and she made sure that each walker felt welcome.

In 2017, the Walk to Defeat ALS returned to Seaside. Fran knew they could make it a great day again. She and the committee found  new attractions for the walk, recruited more teams, and made that walk a very special homecoming for everyone.

This year, 15 years after she first put on her Roughriders shirt, Fran was once again at the Walk’s registration table, welcoming families with support and care.  Fran Carlson’s commitment to defeating ALS will keep her at that table until there is a cure. Thank you, Fran, for 15 years of leadership and for giving so much of yourself to the ALS cause year after year. 

Monday, March 18, 2019

March Volunteer of the Month

Thank You Ashley and Lauren Gibbs!

In the summer of 2014, at the height of the Ice Bucket Challenge, Lauren Gibbs joined the movement and poured a bucket of ice water over her head.

She was wearing her wedding dress.

And therein lies just one example of the love and devotion Lauren and her husband Ashley have for Ashley’s mother, Martha Gibbs, who lost her life to ALS in December 2014. 

Ashley and his beloved mother Martha.
“It came as a complete shock when our mom, who we loved so much, was diagnosed with ALS in January of that year,” said Ashley. “Her diagnosis was particularly difficult because my dad, Don, was fighting a losing battle with cancer at the same time.”

“I don’t know how we would have coped without the help of Dr. Simmons and his team at the Chapter-supported ALS Association Certified Center of Excellence at PennState Health Milton S. Hershey Medical Center. Throughout the course of mom’s illness, our entire family was so appreciative of the Chapter’s many services such as the Howard I. Abrams In-Home Care Program and the Marjorie Shimer Durable Medical Equipment Loan Program,” he added.

 Martha’s disease progressed so quickly that she died shortly after Ashley’s father. It was, to say the very least, a most difficult time.  Ashley and Lauren’s wedding was the highlight of the year and Martha was still alive to celebrate with them. “We cherished the memory of Martha beaming at our wedding,” says Lauren.

After their loss, the Gibbs’ did not waste any time in giving back to the Chapter. They began by participating in the Hershey Walk to Defeat ALS® and, after learning about all the volunteer opportunities, Ashley and Lauren jumped in with open arms and open hearts. They encouraged friends and family throughout the country to join a local Walk to Defeat ALS. They became Community Ambassadors, raising awareness about ALS at many Chapter events. And, Ashley, a big baseball fan, volunteered at the annual Phillies Phestival.

Ashley also began avidly participating in ALS advocacy efforts. He has shared his compelling story with lawmakers in Harrisburg, using his experience to elicit empathy and seek increased funding for ALS care services. And, because he understands the importance of this funding, he continues this vital way of educating legislators about ALS.  

Ashley and Lauren’s shared loss has brought them even closer together. Together they volunteer and are a voice for those who can no longer speak. They have turned their grief into a positive remembrance of Martha. The Chapter is proud to present them with the honor of Volunteers of the Month for their work in memory of this very special woman.  

Thursday, January 31, 2019

February Volunteer of the Month

Thank You Julie Nielsen!

It all happened so fast. Too fast actually. The months ran by like a blur as neurologists and other specialists were unable to pinpoint the cause of Connie Brocavich’s weight loss, weakening muscles, and distressed breathing.

Julie Nielsen, Connie’s daughter, needed answers. That’s when she turned to The ALS Association Certified Center of Excellence at PennState Health Milton S. Hershey Medical Center  and met Dr. Zachary Simmons.

Finally, the search for answers was put to rest. Dr. Simmons found the cause of Connie’s ailments: ALS. Though far from a pleasant explanation, at least they now had a diagnosis and could plan a course of action—along with the compassion and expertise of Dr. Simmons, his entire ALS care team, and Mary Beth Tomczak, a social worker from The ALS Association Greater Philadelphia Chapter.

As the disease continued to progress, Connie moved in with Julie. As Julie adjusted to the physical, mental, and emotional toll of her new role as caregiver, the Chapter’s Visiting Volunteer Program, run by Chapter nurse Gail Houseman, offered welcome comfort and relief. Gail paired volunteer Sandy Saul with Julie and Connie. Every week, usually over multiple visits, Sandy brought friendship and understanding as the family learned to live with ALS.

“I was so grateful to everyone who was there for us,” says Julie. “Gail would come by and check on Mom, and give us guidance on medication, resources, and mental health. When I remember Mom’s disease, I also think about how many people worked hard to make our days that much easier.  I’m thankful to the Chapter, to family, to friends, and to hospice. It was a real team effort.”

Sadly, Connie passed away in 2014. Julie knew without a doubt that after she had some time to heal, she wanted to give back to the Chapter.

That opportunity arose in 2016 when Gail approached Julie to become a Visiting Volunteer. The coincidence of Gail making this request on what was Connie’s birthday was uncanny. It was meant to be! Julie was soon paired with a gentleman named Francis and, to this day, the two spend every Tuesday afternoon together.

During that same year, Julie formed Connie’s Crew, a team of family and friends that is passionate about fighting ALS. Connie’s Crew participates every year in the Greater Philadelphia Walk to Defeat ALS and so far, has raised almost $7,500 that will help fund ALS care and research.

Julie’s path as an ALS volunteer has brought her great fulfillment and purpose. In honor of her beloved mother, she feels blessed to nurture others impacted by ALS and carry forward a message of hope and resolve. Thank you, Julie Nielsen, for all you do as a Visiting Volunteer and Walk Team Captain!

Friday, January 11, 2019

January Volunteer of the Month

Thank You Steve Hildebrand!

Steve Hildebrand had so much to look forward to in 2012. He had a good job, a very happy marriage, and a baby on the way. Life was full of hope and great expectations.

He did not expect to have to deal with the realities of ALS.

While Steve’s wife Heather started to have physical problems during her pregnancy. That seemed normal at first. After all, it is very common to have health issues while pregnant. However, her stumbling and falling seemed less normal and the problems progressed. Heather was familiar with various health issues through her education and work in a Microbiology Lab, but nothing that was happening with her body made sense.

Until then, Heather probably connected falling to her husband Steve. In addition to falling in love after meeting online, Steve had a more serious fall at his bachelor party two weeks before their wedding in 2010. She still laughs about it now, but she was definitely not happy to see him in crutches at their wedding.

Even with the physical complications she was dealing with during her pregnancy, Heather gave birth to a beautiful baby girl on December 26, 2012. Elsie was their Christmas gift that year and every year since.

However, Heather’s problems persisted. In fact, they only got worse. She had more falls over the coming months. Her friends and coworkers noticed that she had a foot drop. Doctors tested for many things, but everything came back negative. On November 3, 2013, before Elsie was even one year old, Heather was diagnosed with ALS.

It was crushing news to Heather and Steve. Just one year before, they had so much to look forward to in their lives, so much love to share, and so much to joke about between them. After they met with Dr. Simmons at Hershey Medical Center and started to get involved with the groups and care team, they regrouped together as a family. Steve looked around and everything in his life. ALS may have changed their circumstances, but it wouldn’t change him, it wouldn’t change the love he had for Heather, and it wouldn’t change that feeling he had that there was still so much to look forward to and enjoy.

In early 2014, Heather and Steve joined the Hershey Walk to Defeat ALS and created Team Derr, which was a play on a name that Heather’s brother used to call her when they were young. They were one of the top teams that year, bringing in many friends and family on the sunny June day as Elsie rode with Heather along the walk path.

That walk, and each one after, was both joyful and hard for Steve. He appreciated seeing everyone come to their side and rally for the ALS cause, but seeing your wife and the mother of your child battle ALS is never easy. She was the star of the day and he wanted that for her. For years, she had been the star of his life.

Being a dad is hard. Being a husband can be hard too. Being an ALS caregiver can be very difficult. Steve was dealing with all of it, but every day, he still had something to look forward to when he came home from work. Heather is still Heather. Elsie grows every day. Since those first stressful months, Elsie has grown up and is no longer their little baby. She’s an active six-year-old child, doing all of the things that a young girl wants to do, including being spoiled with gifts at Christmas and birthday. The best part of those days for Steve is sharing his love and pride for Elsie with Heather. It is the thing he was looking forward to even as he himself stumbled to their wedding day with his broken leg.

Over the years, Steve has brought his story not just to the Walk to Defeat ALS, but to lawmakers as well. He visits the Pennsylvania capital in Harrisburg every year with Heather to share his mix of challenges and hopes so that legislators will empathize with his story and act. It’s a role he never expected to play, but Steve and Heather are incredibly effective at getting legislators to listen and support increased funding year after year.

Steve and Heather have also brought their story to Washington, DC, making the journey to meet with members of Congress and to meet with ALS families from across the country. It’s rewarding for them and gives them a bonding experience with others who understand what they are facing. Steve knows that they are not alone. It makes a difficult situation just a bit easier.

Politics isn’t the only place where Steve has used his powerful story to make a difference. He has been in many local media stories, both in print and on TV, to help raise awareness of ALS so that people will raise money and so that other ALS families know that there is hope and help available to them. Steve never misses an opportunity to make ALS a focus.

While ALS can be a very difficult burden, Steve and Heather still like to joke and have fun together. Heather is a Steelers fan and Steve is a big fan of the Baltimore Ravens and they used that as a competition where the person who raised less money for the Walk to Defeat ALS would have to wear the opposing team’s jersey. Steve was never happier to see Heather lose at something then when she had to wear Ravens colors at the walk. Today, they both have reasons to like the Ravens thanks to the wonderful support of the Brigance Brigade and former Ravens star OJ Brigance, who is also living with ALS. In 2018, Steve and Heather attended an event with OJ Brigance, which helped them bring even more attention to ALS locally.

Through it all, Steve Hildebrand has been an incredible volunteer for The ALS Association and the ALS cause in general. He has used his story as an ALS caregiver to raise thousands of dollars, bring increased awareness for the disease, and create better public policy. He does this by being honest and true to his family and his own reality. Most importantly, Steve does it all because he knows that he has a lot to look forward to and he is going to make sure that all ALS families can look forward to better lives too.

Tuesday, January 1, 2019

2018 Volunteer of the Year

Thank you to the Malloy Family!

The ALS Association Greater Philadelphia Chapter was founded in 1977. Roughly three years later, Patrick Malloy was diagnosed with ALS. For most of the Chapter’s history, the Malloy family has been connected to the ALS cause. Their work has continued through good times and bad, which makes them more than worthy of being named as the 2018 Volunteers of the Year.

Patrick Malloy was diagnosed with ALS in October of 1980 at the age of 45.  He had a young wife and six young children. At the time of his diagnosis, there was almost no help for people with ALS and even less hope. In fact, most doctors at the time barely knew about ALS.

 “Daddy only had a squeaky stationary bicycle for therapy and a wheelchair. Nobody told us anything about the disease,” Kathleen recalled. “His neurologist told him to get his affairs in order and that we should try to make him comfortable. We were lost.”

When her dad was diagnosed, Kathleen, who was just 12 years old, was thrust into a role of caregiver along with her other siblings. In addition to assuming the role of caregiver, their mother Kate Malloy went to work full time to support the family financially. The oldest brother Patrick Malloy Jr. had just graduated from Moravian College in June of 1980 and their brother John was just starting college. The Malloy children were all busy growing, going to school, and planning their lives, focusing on futures that they never dreamed would include battling ALS. 

They also did not know that veterans like Patrick were twice as likely to be diagnosed with ALS. Years earlier, he had served honorably in the 82nd Airborne division of the US Army Paratrooper Division during the Korean War.  It would be decades later before the United States government acknowledged the extent of the connection between ALS and military service.

Patrick lived with ALS for nearly five years and passed away on May 12, 1985. His battle with the disease inspired the family to coalesce and find ways to support the ALS community. The members of the Malloy family were all finding their own unique ways to spread awareness of ALS and raise money for better care and research.

The ALS Association started the Walk to Defeat ALS in 2002 and the Malloy family was among the first teams to ever participate in a Chapter walk. Pat’s son John formed the Pat’s Posse team for the first walk at Franklin Mills Mall. It was a small team as everyone was still learning about what a walk would be like and how to fundraise. Soon after, Ann got involved and became the walk captain. Then their brother Charlie got involved with writing about his experience caring for his father with ALS and the effect that it had on him personally. Charlie also regularly participated in the Ride to Defeat ALS. 

Over the next decade and a half, Ann spearheaded the Pat’s Posse team. She used every ounce of her considerable energy to bring people together for the cause. Every year, she would find more ways to make the team successful, including holding additional fundraisers and volunteering to support families and those with ALS by making personal visits. Ann told everybody that finding a cure for ALS was what woke her up in the morning. She did not want any other little girl to see their dad go through what her dad went through with this disease. The Malloy family has raised well over $100,000 to fight ALS through their walk team over the years and they are determined to continue their work.

It’s enough that the Malloys have had to weather the heartbreak of losing a beloved father. But, tragically, ALS robbed them again of loved one when their oldest brother Pat Malloy, Jr. was diagnosed with the disease in 2015. 

Everyone in the family was shocked. As opposed to when their father had ALS, now everyone knew what to expect. He lived in New Jersey but moved back to his roots in the Philadelphia area and lived with his mot her who became his primary caregiver. Since the family was so connected to the Chapter, they knew who to talk with at The ALS Association and Ann made sure to ask questions of the Chapter’s nurses and social workers to connect her brother to the best care possible. Each sibling played a caregiving role, from Ann connecting with the local ALS Association Chapter to brother Tim coordinating health insurance to Kathleen navigating Patrick’s direct care. 

Patrick played defensive tackle for Moravian College’s football team and was President of his class. When his former classmates learned about Patrick’s battle with ALS, the alumni network rallied to his cause. Unfortunately, Patrick’s battle with ALS was shorter than his father’s and he passed away in January of 2017.  Years earlier, Patrick had guided his sister Kathleen into her own college career at Moravian.  In memory of Patrick, Kathleen and Ann worked with the college to keep his memory alive and educate others about ALS. In the spring of 2017, Ann and Kathleen were invited to talk about the realities of ALS during the college’s Brain Week. 

It was there that Kathleen made new connections with the college and met another person with ALS, Sarah Brendle. They quickly became friends, united through very different ALS stories. Sarah recruited Kathleen to become an advocate and they began visiting Harrisburg together to speak with state legislators.

Advocacy has given Kathleen another avenue in which to support the ALS community. Because of her efforts, the state of Pennsylvania has increased its funding for ALS care programs by 50%. Kathleen’s brother Charlie also participates in advocacy at the national level and visits Capitol Hill each year to make the case for funding ALS research while working with his local ALS Association Chapter in Virginia.

The pain of losing their brother Patrick was still raw when the unbelievable happened. Ann Malloy, the amazing, indefatigable leader of Pat’s Posse, was diagnosed with ALS in May of 2018. The disease was a rapidly progressive form of ALS and it took Ann’s life just two months later.

For years, Ann was the driving force behind Pat’s Posse. She had already registered their team for the Greater Philadelphia Walk to Defeat ALS before she was diagnosed with the disease herself. There were two things that Ann wanted to see in her life: a cure for ALS and an Eagles Super Bowl win. She got one of her wishes, but her family is determined to make her other wish finally come true.

This year, Pat’s Posse is walking without their captain. This year, their team is walking for Ann. Kathleen notes that it’s almost ironic that the woman who fought the hardest is the one who was taken down by this disease. Ann said that “there’s always hope,” and, admittedly, that can be hard to see sometimes, but the Malloy family all knows that they will see a sea of family, friends, and supporters when they Walk to Defeat ALS again at Citizens Bank Park on Saturday, November 3. 

The Malloy family has been volunteering, raising money, and bringing hope to the fight against ALS for over 35 years. It has not gotten easier, but their determination is stronger today than ever.

Monday, December 10, 2018

December 2018 Volunteer of the Month

December Volunteer of the Month: Christine Moretti

While it may not be obvious from her always cheerful demeanor, our Volunteer of the Month, Christine Moretti, has been fighting the odds since birth. She and her twin brother were born three months premature. Christine weighed just a pound and a half. The twins were baptized and given last rites because her parents were told that they were not expected to live.

Survival for such premature babies was quite a remarkable feat 63 years ago, but Christine has proven to be remarkable from day one as she and her brother not only survived, but maintained a fighting spirit that has helped them get past many unimaginable obstacles in life.

Christine especially had to muster her courage and perseverance in later life when she was faced with cancer and a brain tumor. An indomitable fighter, she survived both. Yet, after pulling through these severe illnesses, Christine was faced with another acute situation: primary lateral sclerosis, or PLS. A form of ALS, PLS causes weakness in voluntary muscles of the arms, legs, and face.

The journey that led to Christine’s PLS diagnosis was exhausting. Doctors initially attributed weakness on her left side to the brain tumor, but when the problem didn’t eventually resolve, more exploration was needed. After three long years of specialist visits and multiple MRIs, Christine met with Dr. Goran Rakocevic, the chief neurologist at the Jefferson Weinberg ALS Association Certified Center of Excellence. After a thorough assessment, he was able to finally give Christine a diagnosis, as well as access to an expert, multidisciplinary ALS care team to help her optimally manager her symptoms.

Christine hasn’t missed a moment planning her offense against PLS. She stays abreast of the latest research. She throws herself behind the Greater Philadelphia Walk to Defeat ALS and the Ride to Defeat ALS, urging family and friends to donate to her teams and raise awareness for the ALS cause.
What’s more, she is a valued advocate for the ALS community. She raises awareness near and far, speaking to media personalities, state and federal lawmakers, business leaders, and even our beloved Philadelphia Phillies.

Christine says that in her past she would never have imagined herself having the courage for public speaking.  But this disease has changed that.  “My PLS diagnosis brings what is important into focus,” she says. “That’s why I concentrate this time of my life on the people and things that matter most to me.”

It’s clear that finding better treatments, and ultimately a cure, for ALS matters very deeply to Christine. Who else would stop Congressman Brendan Boyle at a local restaurant to remind him of ALS priorities?

Yes, Christine actually did that…plus, so much more! Each year, she travels to Harrisburg to meet with Pennsylvania legislators to seek funding for ALS care services. In 2017, she was invited to the floor of the State Senate to receive a proclamation for ALS Awareness Month. She also visits Washington, DC to meet with members of Congress where she makes the case for further funding for ALS research. Additionally, Christine serves as a consumer reviewer for the ALS Research Project at the Department of Defense, where she has become a valued voice as they guide research and ideas.

In fact, Christine Moretti has been a valued voice everywhere she goes, inspiring greater awareness and action in the fight to end ALS. She attends every event possible to support The ALS Association, the Jefferson Weinberg ALS Association Certified Center of Excellence, and the ALS community.
Nothing can prepare a person for ALS, but Christine’s many battles in life have given her the experience and the perspective to bring strength and comfort to all those living with ALS.