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Kirkin It
8/29/2013

 

In Robert Caro’s books about President Lyndon Johnson, he writes that power corrupts, but power also reveals. The same is true with ALS. It corrupts the workings of the body, but it also reveals the impact you have had on others. For Roger Kirk, being diagnosed with ALS certainly brought hardships, but it also revealed how much he means to everybody in his life.


Roger was recently diagnosed with Lou Gehrig’s Disease and his children quickly formed a team for the Greater Philadelphia Walk to Defeat ALS®. Within days, they quickly learned what their father has meant to hundreds of people in many walks of life and the difference he continues to make to this day. It wasn’t specific actions that Roger took that made a difference to others, but instead the example he set through how he has lived his life and how he continues to live every day with a smile on his face.


The biggest impression Roger made on his five children (Tim, Ryan, Joey, Jenny and Diana) was through the example of his marriage to his wife Maryanne. Roger has been successful both at running the company Corporate Networking Inc., and as President of Old York Road Country Club. Yet he attributes his success to Maryanne, who has been a support system since 1979, long before she became his biggest supporter in his life with ALS. Their relationship set a tone for their children, who had something to aspire to in life beyond money or fame. They instead saw riches in a loving bond between two people and extend the nature of that bond with their own friends and family.  Rogers eldest boys Tim and Ryan each have new families of their own where these values instilled by their parents shine bright into the next generations.  Tim's wife Melissa, 2-year-old son Johnny, and Ryan's fiancé Kaitlyn feel honored to have Roger as a part of their lives and family and have made this a very personal cause as well to grow and build their walk team.

The Kirk’s marriage has proven to make quite a difference in the lives of Roger’s children. Not only are all five heavily involved in the Walk to Defeat ALS®, but their significant others have made this a personal cause as well. Tim’s wife Melissa and Ryan’s fiancé Kaitlyn are both important parts of the family and vital to the success of their walk team.


Teamwork has always been important in Roger’s life. Through his work running Corporate Networking Inc. and his involvement at Old York Road Country Club, where he has been since 1992, including the past two years as Club President, Roger’s personal success has come through guiding the success in others. In his nearly two decades at Old York Road, Roger has greeted everybody he has met with good humor and a friendliness that is contagious. He makes sure that everybody around him knows that they are valued. After all, that is how he would want to be treated.


Another way to put it would be that Roger Kirk believes in the Golden Rule. His children all talk about how he lives all aspects of his life through the Golden Rule and not only does it show in his actions, but it has paid off now as people learn about his ALS.


That is because people aren’t donating and volunteering simply because they want to put an end to ALS, though they certainly do want that. The people donating to Kirkin’ It want to put an end to ALS for Roger. Since learning about his diagnosis, people from all walks of life have asked how they can help. Some have even canceled plans to come from as far away as Washington State to participate in the Walk to Defeat ALS® on November 3rd in Philadelphia.


ALS has the power to end life, but it is the life that matters most. When you talk to Roger’s family, they are all full of energy and love for each other and their family. The values that Roger shared with them through his words and actions shine through in how they treat and value others.  Tim, his oldest son, works along side him at his company.  Ryan is putting Roger’s lessons to work in financial services. Joey is in Washington, D.C, working at the British Embassy, with a focus on education. Jenny is just beginning a career in banking while Diana is finishing her senior year at the University of Scranton, but all five of the children, no matter the stage in their career, know that they have strong examples to aspire to throughout their family.


No matter the path their lives take them, they all promise to be like their dad and go by the Golden Rule.
Even in regards to his diagnosis, Roger maintains the same values. His children are working hard in support of their father, but Roger wants to make sure to find a cure for their generation and generations to come. Even in his most difficult times, Roger is looking out for others, strangers even, and making sure that his children learn from that lesson as well.


This profile is not about a disease, nor is it even about the services available to those living with ALS. Just as Roger has spent his life valuing others as people and not numbers on a spreadsheet, this is a reminder that at the heart of everything we do in our organization, from events to advocacy to even daily interactions, is grounded in recognizing the humanity in everybody who comes through our doors. Roger wants his children and everybody else to know that a person in a wheelchair at clinic is not just another ALS statistic. They are a person first and foremost and they deserve the same dignity and respect as anybody else.


The Kirk family is looking forward to sharing that perspective with thousands of other family members, friends and supporters at the Walk to Defeat ALS®. There they will see a lot of people affected by ALS, but, just as their dad showed through a lifetime of examples, they will greet everybody as people first.


We wouldn’t want it any other way.

 

 

Research Update from Pennsylvania Hospital
8/15/2013


                            ALS Center at Penn Research Report
                                                  By Kelly Almasy, RN Clinical Research Coordinator

                                                                              August 2013



UPCOMING POTENTIAL STUDIES/TRIALS/INVESTIGATIONS

Knopp Project: The future of Dexpramipexole in ALS/MND
 The Envision trial was abruptly stopped by Biogen Idec because data from the feeder study showed no statistical difference between the treated group and the placebo group. Biogen has decided to discontinue development of dexpramipexole. Knopp Biosciences has interrogated the data and in Post Hoc analysis has identified sub groups of patients that seem to have benefited from dexpramipexole treatment.  They are in the early stages of planning on how to better investigate this finding and possibly proceed in the development of dexpramipexole for these specific ALS sub groups.  The ALS Center is participating in this effort preliminarily.  We are still awaiting advice on our role in this project.

Rasagiline 80 Study
The ALS Center was chosen some time ago as a site for another study of Rasagiline in 80 patients.  This Phase II WALS/University of Kansas study will continue to look at safety of Rasagiline in ALS and will lay the ground work for a larger Phase III trial.  Rasagiline is currently FDA approved for use in Parkinson’s disease and is being tested in ALS because it has broad neuro-protective qualities. Subjects will be randomized at a 3:1 ratio (60 on Rasagiline, 20 on placebo).  The ALS Center will be one of only 6 sites participating in this trial.  We will recruit approximately 10-13 patients from our site. Our site recently submitted regulatory documents for this trial and the protocol will be submitted to the IRB soon. A late fall start date is expected.

ACTIVE PROJECTS

Marijuana Use in ALS Patient
The ALS Center has received IRB approval to conduct an anonymous survey of our Clinic patients concerning Marijuana use in the ALS Patient population.  Our Clinic serves predominantly the tri-state area of Pennsylvania, New Jersey and Delaware.  Medical Marijuana is currently legal in New Jersey and just recently was legalized in Delaware.  Some of our patients in Pennsylvania have voiced frustration and what they feel is “an inequity in the treatment options available to them to treat their ALS symptoms” because of where they live. This survey is being conducted to further investigate this topic and also to collect information about the “perceived effectiveness” of this treatment to treat ALS symptoms.  We have distributed more than 100 surveys so far and have an 80% response rate to date.  We will distribute the survey for approximately 6 months. 

Cytokinetics
The ALS Center is participating in a Phase IIb Multi-National Clinical Trial to evaluate the Safety and Efficacy of CK-2017357 in patients with ALS sponsored by Cytokinetics.  We have recruited 5 subjects thus far for the trial that will run through October 2013.  Recruiting was slated to end mid July, but after a computer glitch necessitated the removal of approximately 60 subjects, there will be another recruitment push again in late Sept.  No subjects at our center were affected by the error.  A protocol amendment must first be IRB approved to allow for additional enrollment.

 CK-2017357 is a novel small molecule activator of skeletal muscle and is being developed to improve skeletal muscle function in diseases associated with muscle weakness and fatigue.  The study is expected to last for a year but each subject will only be enrolled in the treatment arm for 12 weeks.

Cost Assessment Study
 The ALS Center participated in a 3 month prospective study of the costs associated with care provided at 15 ALS Center sites evaluating costs associated with ALS care. The final data collection date was March 1.  We are awaiting the results of this interesting study.


A Multi-Site Controlled Screening Trial of Rasagiline in 30 Subjects with ALS
 The Rasagiline trial, a Phase II, investigator-initiated, multi-center study of Rasagiline in 30 subjects with ALS completes this month.  Both of our subjects completed 12 months of treatment and did not experience any adverse events. The trial is a joint venture of Teva Pharmaceuticals and the University of Kansas and the precursor for the Rasagiline 80 Trial.

 
Identifying New ALS Genes
The Center for Neurodegenerative Disease Research is screening all samples for the mutation in the C90RF72 gene.  Letters to notify patients affected with the mutation were mailed in January 2013.  All subjects that participated in the research got a letter regardless of the mutation.  Subject’s positive for the mutation received call back information to contact the genetic counselor at the CNDR.  All others patients received contact information to call myself or Ashley Boller.  Successive batches of letters will be mailed until all locatable patients have been notified of the availability of results.

ALS/FTD Program Project Grant (PPG)
The purpose of this research study is to develop a better understanding of the genetic causes for both ALS and fronto-temporal dementia (FTD). It is hoped that such information will advance the knowledge of what causes this condition and in the future lead to a diagnostic test and treatment for both ALS and FTD. The study involves one blood sample, a cerebrospinal fluid sample (only if clinically indicated), brain MRI, and neuro-cognitive evaluations. We began recruiting subjects in December 2006 and continue active recruitment.



                 Breakdown of Participants in ALS/FTD Research Project to Date (August 13, 2013)
                                                 # of blood samples obtained to date    498
                                                 # of plasma samples obtained to date    545
                                                 # of CSF samples obtained to date    124
                                                 # completed MRI study    46 (+11 controls)
                                                 # participated in neuro-cog testing    130
   
   


Tissue Donation at the University of Pennsylvania


Patients of physicians within the University of Pennsylvania Health System are eligible to enroll in a program for autopsy to be performed at the time of death. In particular, individuals may choose to donate their brain and spinal cord to help further research conducted at the Center of Neurodegenerative Research in collaboration with the Department of Neurology at the University of Pennsylvania. Previous brain/spinal cord donations contributed to the discovery of TDP-43.

We have collaborated with the Center for Neurodegenerative Disease Research team to re-write our patient literature and streamline the donation process for families. 133 patients have donated tissue in our program.

Cognitive screening in clinic
Murray Grossman’s P-BAC tool is in use.



Please contact the Nurse Research Coordinator with any questions: Kelly Almasy BA, RN,  Kelly.almasy@uphs.upenn.edu

 

 

 

It's So Easy
8/12/2013

By Karen Delaney Shideleff

It is nearly impossible to find anything "easy" with ALS. Every action takes thought and exertion. This past week, I finally found something that is EASY! I registered to be a donor for the National ALS Biorepository Study. It took a few emails, one phone call, and a signature to join

If you are a member of the National ALS Registry, and all people with ALS should be, you can participate in this study! After learning about the study and reviewing the consent, I was able to set up my tissue donation appointment. I don't even have to leave my house because they come to me. Seriously, it does not get any easier. Study participants are seen in their home by a nurse who will draw blood, clip hair and take nail specimens. You are also asked to give a urine sample. That's it!

The Agency for Toxic Substances and Disease Registry is studying the best way to collect, store and share samples with ALS researchers. ATSDR is looking for 300 participants but they are barely at 100. There are

approximately 30,000 people with ALS in America and with your help, we should be able to reach 300 participants in no time at all. My PALS friends have signed up already. Please, email, call, and sign up TODAY! Tell all of your ALS friends and let's break the barrier of only 10% of people with ALS participating in ALS research. All of the information you need to get started is listed here.

Information about the study is at http://wwwn.cdc.gov/als/ALSBioRegistry.aspx Laurie Wagner, Pilot Study Coordinator, can be reached by email at lwagner@mcking.com or by phone at 1-855-874-6912. Please sign up today and let's advance ALS research together.

 

 

 

 

Hacking the Brain
7/29/2013

Usually, when our Chapter promotes the latest in ALS research, we talk about genetics or the testing of new drugs or the discovery of a new protein that could unlock clues as to who gets ALS. However, as Dave Ihde, an Air Force veteran with ALS from South Central Pennsylvania, shared with us, “Many other research projects are ongoing, and not all research is clinical trials.” More specifically, Dave is talking about the new Brain-Computer Interface studies with Andrew Geronimo from the Center for Neural Engineering at Penn State University, with support from Dr. Zach Simmons, director of the ALS Clinic at Hershey Medical Center, and Dr. Steven Schiff, Andrew’s advisor at University Park

 

We recently spoke with Andrew to learn more about the work he is doing to advance brain technology and the possibilities for people living with ALS.

The technology, shown here in this picture of Dave Ihde visiting with Andrew, is known as a Brain Computer Interface or BCI. This is just the first step towards what could be a promising tool for people with ALS and others living with forms of paralysis. The Brain-Computer Interface works with an EEG (Electroencephalography) cap, wired to a computer, which Dave is wearing in his visit. For the past three years, Andrew has been working predominantly with college students to learn the efficacy of BCI, and now he is beginning his work to see how it could benefit people living with ALS and others who lose all voluntary motor control. If all works well, these subjects would be able to control programs on the computer using their mind.

 

Andrew began this new phase of research in May. The first step is a survey of acceptance, which is very important. Unsurprisingly, this technology is complex and expensive, so it is important for Andrew and his colleagues to be certain that people with ALS are comfortable using it, that it can meet their needs for communication and daily living, that the device actually works in a way that the subject can comprehend, and that caregivers would be able to understand the BCI and help utilize it. Once a number of test subjects show that they can use BCI effectively, they can move onto the next phase, which will include four sessions about how to control the Brain-Computer Interface.

 

Currently, there are 25 people with ALS enrolled in the first part of the study and 6 people are in the second part as of now. Because working on new technology does not need a control group or a placebo, Andrew does not need a huge population of people with ALS like you might see in clinical trials for new drug treatments.   In his work, he combines cognitive testing, clinical data, and genetic samples from his subjects.  This allows him to determine the impact of these factors on the technology, how well people are able to adapt to it, when a person with ALS should potentially start using BCI in the progression of their disease, and what would be a viable prescriptive guideline if it is useful.

 

That is how the Brain-Computer Interface phase one study works, but what are the benefits of this technology?

 

BCI has been discussed for years as a potential wealth of independence for people paralyzed by diseases like ALS. The most obvious benefit is for communication, potentially allowing people to type and speak through a computer using responses from their brains. Beyond that though, as more and more aspects of daily living become wired, there exists the possibility to manipulate your home environment, turn lights on and off, raise or lower a hospital bed, or, with more advancement, control your wheelchair. These brain connections will need many more tweaks to get to that level, but we’ve already seen how things like the human genome map have become much cheaper and accessible in just a decade, so there is every reason to remain optimistic about what could lie ahead.

 

In fact, a group at the Wadsworth Center in Albany, NY is taking BCI a step further and using it in people’s homes. They are looking at how BCI can help people have more freedom in their lives. These studies may prove invaluable in the not too distant future, especially as the costs of the technology become more affordable and the computer interface itself becomes more practical.

 

Andrew Geronimo’s work involves processing information about the brain that has been recorded through the scalp. This barrier comes with limitations on what signals he can get, but he is still able to see what arm a person is thinking about moving and other movement thoughts, which, when processed the right way with the computer can lead to positive results for the person using the Brain-Computer Interface. Other brain recording methods, which can include risky and complex brain surgery, implant small electrodes into the brain and can allow researchers to see fine detail of what the subject is trying to move.

 

While there is less risk involved with the Brain-Computer Interface technology in this study, the potential long term reward is still great. Technology has progressed at a fantastic pace in the past few decades while becoming more affordable and accessible. We do not yet know what the work of Andrew Geronimo and his colleagues will lead to, but his efforts, as well as the invaluable contributions from people with ALS like Dave Ihde and others, give us all reason to hope for a better future in our mission for all people living with Lou Gehrig’s Disease.

To learn more about the Penn State Center for Neural Engineering, visit http://www.esm.psu.edu/wiki/research:cne:start

 

 

My Advocacy Experience
7/12/2013

By Tom Phelan

This past May, Tom Phelan joined us for ALS Advocacy Day in Washington. He's continuing to work towards a world without ALS by participating in this year's Ocean City Board...Walk to Defeat ALS. Sign up to join him.

Each year the ALS Association organizes a four day conference centered around ALS Advocacy Day. For Advocacy Day, the association organizes meetings with PALS (people with ALS) and their families, as well as with those who have already lost love ones, with congressmen and their staffers. During the meetings we tell them our story, letting them know what is like to be a family living with ALS and what they can do to help. It is one thing to know in a general sense that ALS is an awful disease, it is quite another to see it first hand which is why our presence is so important.

When it comes to research, one of the problems with ALS is that "only" about 6000 families a year in the US are devastated by a diagnosis of ALS and 6000 new patients a year are not enough to attract significant private investment in medical research given the enormous amount of money it takes to develop a new drug. The result is that ALS researchers have to rely heavily on private donations and government funding. Given the very high cost of caring for an ALS patient throughout the course of the disease, a cure or effective treatment could save a significant amount of government money especially since most of us lose our insurance when we stop working and are forced to rely on Medicare.

One little known fact about ALS is that veterans, regardless of branch or length of service, are twice as likely to get ALS. As a veteran, this means there is a 50/50 chance that my ALS is the result of my military service. Far more significant than my own story, this fact argues strongly for environmental factors playing a significant role in the onset of ALS. Given the number of veterans who have contracted ALS, I have to believe that somewhere in the data lies the answer to why veterans get it at twice the normal rate, and it is very possible that the answer to this question could provide a major clue to reducing and maybe even curing ALS. Several years ago, with the help of government funding, just such a database was created, but for this effort to bear fruit it is vital that the funding continue.

Advocacy is especially important this year because sequestration not only cut subsidies to organic hybrid seaweed farmers, it also cut fun ding for medical research across the board.

Sorry if I got too far into the woods, but fighting ALS anyway I can is now a significant part of my life. Now I'll get back to telling you about the conference and our trip.

I don't know the official numbers, but I believe over 1000 people attended the conference including over 100 Persons with ALS, family members, friends, caregivers, and many who have made battling this disease and helping ALS families their life's work. Especially poignant were the spouses and children of those who have been taken by ALS years ago who continue to attend year after year to do everything they can to fight this disease. I would be lying if I said it wasn't a little difficult seeing so many examples of what lies ahead, but this was nothing compared with the strength of spirit and warmth that was palpable at every event. Many PALS had already lost their voice, but that didn't matter as the most important things were communicated without words.

The keynote speakers at the opening night dinner were O.J. Brigance and Steve Gleason, both NFL players who developed ALS in their 30's. Both have lost their voice to ALS, but this didn't stop them from giving genuinely inspirational speeches. Gleason has become known for ending his talks with "No white flags!" Even though all of us listening know that a cure might not be around the corner for those of us who already have ALS, there wasn't a white flag in the room. If we can't beat ALS in time for ourselves or our loved ones, we certainly can do something to get closer to a cure so that someday ALS will lose its power to destroy healthy bodies and devastate families.

While Karolina and I attended conference events, Sophia and Emma spent the time with their dziadzia (aka their grandfather) walking the mall and exploring the museums. Karolina and I were scheduled to visit the offices of three congressmen, Rush Holt, John Runyan, and Frank LoBiondo. However, Holt and LoBiondo were not able to schedule time to meet with us personally so we spoke with members of their staff. Nonetheless, Congressmen Holt was very gracious and did sit down with us for a little while even though it almost made him late for a House vote! The highlight of the day was our visit with Congressmen Runyan. Since we knew we would be meeting with him personally, we had Sophia and Emma join us. It was an amazing experience for them to be able to talk to a congressmen about an important issue and perhaps play a small role in helping to pass legislation to fight ALS! Of course after the serious stuff we got footballs signed and a picture with Runyan. I was going to have the girls sing "Fly, Eagles Fly!" but fortunately calmer heads prevailed (i.e. Karolina's) and we just thanked Congressman Runyan for his time.

On the second day we did get a chance to get together with Sophia, Emma, and dziadzia to do some sightseeing before heading home. It was an exhausting two days both physically and emotionally, but we are very glad we went and will be booking our hotel for next year as soon as they set the date!

You can be an advocate too! Email Tony@alsphiladelphia.org to find out more. 

 

Click here to join Tom and other New Jersey families at the 2013 Ocean City Board...Walk to Defeat ALS.

 

 

Why I Advocate
7/12/2013

By Carol Resides

My life changed on October 1, 2012, when I was diagnosed with Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease. ALS is a particularly cruel disease that destroys a person’s ability to control muscle movement.  As the disease progresses, I may become trapped inside my body; unable to walk, talk, breathe or even blink an eye. 

There is no effective treatment for ALS, no known cause, and no cure.

The disease also does not discriminate in who it strikes and can impact anyone at anytime, regardless of their age, gender, race or ethnicity.  Military veterans are approximately twice as likely to die from ALS as those who have not served in the military. 

And it is always fatal – in an average of two to five years following diagnosis. 

This disease has robbed me from the dreams I had to travel, volunteer, and garden after years of working.  I have always been a hard worker, and was looking forward to having some time to relax and enjoy some of this nation’s great nature and get away destinations.  ALS turned those dreams upside down. I now cannot even dress myself, or take a shower, or comb my hair on my own.  Just getting a deep breath is impossible without the aid of a machine. 

I have enjoyed many activities over the years, but teaching was one of my favorites.  I loved to see the “light go on” as children learned to read.  Whether in the classroom, or tutoring at the local library, the smiles on kids’ faces when they realized they could accomplish something they had never done before always brought a smile to my face as well.  Reading to children was a delight.  Now I can no longer hold a book or speak loudly enough to entertain even a small group of children.  How I miss those days.

I enjoyed walking, bicycling, gardening, mowing the lawn, hiking a trail, quilting, card making, baking, helping a neighbor or a friend, or just sitting by a creek on a lazy summer day listening to the sights, sounds, and smells of the world around me.  All those things elude me now as I spend most of my time in a wheelchair unable to walk or stand, or bend over to smell a flower, or lift a baking pan to make some delightful treat to pass out to coworkers or friends. In one sense, I’ve become a prisoner inside my skin unable to physically reach out to those around me.  In another sense, I’m still the person I was before I had ALS….a thinker, a writer, a poet, and a dreamer.  I dream of the day when those diagnosed with ALS aren’t given their death sentence, but instead are given hope because a cure has been developed for this horrific disease.  So many great strides have been made for treatments and cures of other terrible diseases, so much more to be done.  So, although there are many things I cannot do any longer, I can give voice to those who suffer with Lou Gehrig’s disease. A voice to make others aware of what ALS is, and how one day with the help of many, a cause, a treatment, and a cure will be found.

This will be Carol's first year participating in the Greater Philadelphia Walk to Defeat ALS with her team Carol's Crazy Curesaders. Click here to join her on Sunday, November 3rd at Citizens Bank Park. If you live in another region, click here to join a Walk to Defeat ALS near you!

 

 

What ALS Means to Me
7/1/2013

By Gary Beech

To me, ALS means a constant fight every day. It is a fight for me, my children, my family and my friends. When I was diagnosed almost five years ago, I had no idea what ALS was, or what kind of effect it would have on me in the future. I consider myself lucky. I have what they call a slow progression of ALS. But at the same it is a curse. My family and friends have to watch and see me struggle everyday. My muscle weakness has been affected. Walking is very tough because my leg muscles have been taken away. My arms can barely hold or carry anything. My hands have been cramping along with my legs. My chewing and swallowing is slowly being taken away. That is what is so very difficult about the slow progression of ALS and why it is so important to put an end to this disease.

 

No matter what form of ALS someone has, whther a very fast progression or a very slow progression, the effects to the person and their family and friends are so very difficult to deal with every day.

 

 

What is most important is that we educate ourselves and others about ALS. You should have as much information as you can about the disease so that you can get involved spread the word. We need you to raise awareness and funds about and for ALS.

 

 

My name is Gary Beech and I live with ALS. It does not define who I am. It only makes me fight more everyday against this disease. NEVER GIVE IN!!

Click here to support the fight against ALS.

 

 

 

 

Michael's Story
6/28/2013

My name is Michael Ramer and I was diagnosed with ALS in March of 2007. I was just 28 years old and was starting to feel symptoms of muscle cramping in my arms that finally forced me to go see a doctor. After a year of tests, I was diagnosed with Lou Gehrig's Disease.

It has been six long years since I was diagnosed. So far I have been blessed with only losing partial use of my left hand and some weakness in both arms. I stay active by walking ten miles every day. I get a lot of pleasure out of working on my labor of love, my award-winning 1994 Isuzu pick up truck. Weather permitting, I to to as many weeknight and weekend car shows and car cruises that I can to show off my truck, though I try very hard not to drive my baby in the rain!

The most important thing I have found is to always keep a positive mindset. When I am feeling depressed, I feel worse, so I take one day at a time and feel blessed for every day that I have.

I also have great doctors and staff through the ALS Association Greater Philadelphia Chapter and the clinic at Hershey Medical Center. Without them and everybody out there who is raising money to defeat ALS, I would not be doing as well as I am today. I am very blessed to have these amazing people by my side to help me throughout this disease.

Thank you for taking the time to learn more about the people who are living with ALS. Please join us at a Walk to Defeat ALS or by getting involved today.

 

 

 

Happy Fathers Day!
6/28/2013

 

Newly Diagnosed
6/26/2013

By Jennifer Zink

My name is Jennifer Zink, I am 39 years old, and I have three children aged 17, 15, and 12. I was formally diagnosed with ALS a few months ago. Despite my recent diagnosis, I have been living with the affects of disease progression for the past three years. My progression is slower than what many other people experience, and that is both a blessing and a curse. I have more time to spend with my family, but I must live every day with this debilitating and difficult disease. I will suffer longer, and my family has a longer period of time to watch me fade before their eyes. It’s a very hard thing living with the knowledge that I will never again live the full life I used to have and knowing that my family struggles daily to care for me and to finance my needs as the disease progresses.

My husband and I purchased our current home a little over two years ago. At that time, my symptoms were so mild that we didn’t know anything was really wrong with me. I had always been clumsy, and we thought my tripping and falling was related to rushing around and getting settled into a new home. Our home has two stories and the shower is on the second floor, which makes showering difficult. My husband recently cashed in one of his retirement funds so that we can build a handicapped bathroom on the first floor. My husband, son, and mother recently moved our bed down to the living room because climbing the stairs is not only extremely difficult for me, but also very dangerous. I still have a showering issue, however. I must climb the stairs every few days so that I can shower. On the days when I don’t attempt to use the stairs, I use bathing wipes from a pharmacy to get clean. It’s not an ideal situation, but some days using the stairs is impossible. I just hope we have enough money to get the handicapped bathroom completed.

My husband works from home, so he is with me all of the time. Even though he doesn’t complain, I can see what a toll it is taking on him. He’s tired, overworked, and sometimes my care interferes with him getting work done for his job. That is a huge problem because it is our only income and we don’t want him to lose his job. Other family members do what they can to help, but they work, too, and can’t be here all of the time.

Sometimes I fall on the floor, and getting off the floor is near impossible. Thankfully, the ALS Association Greater Philadelphia Chapter has a loaner closet and they are going to be sending me a Hoyer lift, which will help my family get me off the floor when I fall. Additionally, they said once our new bathroom is completed, they can send me a shower chair so that I can shower safely. My current shower is not only upstairs, but is too small for a wheelchair to fit inside of it. My husband stays near the shower while I’m in there because I get horribly weak during the shower and nearly fall over before I’m done washing. It takes me a long time to wash up since moving is difficult. Once he gets me out of the shower, I have to lie down for a while to rest before he is able to help me dress. I’m just too exhausted. Having a shower chair from the ALS Association will be a tremendous help – not only because I will physically be safer and less tired, but also because it would be one less expense for us. This disease is so expensive to deal with.

I go to the ALS clinic in Philadelphia at Pennsylvania Hospital. My medical team there is phenomenal. Due to their care and teaching, and due to the ALS Association loaner closet, we have hope we never had before going to Penn. We had no idea of the resources that are available to ALS patients. We felt very alone and overwhelmed in what we were facing. Knowing that the clinic and the ALS Association are there and available to help us meet some of our needs, we are much relieved and no longer feel alone. I can’t tell you how important that is to those of us with ALS. This disease is so scary. I’ve always been very independent and I don’t like to accept help, but I’m tremendously grateful for what the clinic and the ALS Association do for us. I don’t know where we’d be without them, but I can tell you this: we would not be in a good place.  We need the help they provide.

Another way in which the ALS Association brings us hope is when they make special activities available to us and our families. They recently sent me six tickets to be used in Wildwood that gave us a full day at the water park, the rides, and an amazing lunch. It was wonderful! It allowed me to have a fantastic time with my family. I wasn’t able to go into the water or onto the rides, but I enjoyed watching my children have fun. I’ve always believed that making memories is very important; I believe that more than ever now. I’m trying to do as much with my family as I can before I deteriorate to a point where it’s too difficult to participate in things any longer. I’m so thankful that the ALS Association makes activities like this available to us.

Being newly diagnosed, I’m sure I’m not fully aware of all of the ways in which the ALS Association helps those of us suffering from this disease. That is significant because they’ve done so much for us already. My family and I are incredibly grateful for the ALS Association and the wonderful people who work at the ALS clinic at Penn. Without them, our lives would be so much more difficult than they are now.

 

Click here to support The Greater Philadelphia Chapter today.

 

My Experience in Washington and Trenton
6/14/2013

My name is Carol Resides and I was diagnosed with ALS on October 1, 2012.  For well over a year I sought medical help because I know something wasn’t right in my body.

Test after test, doctor after doctor, until I finally made an appointment at U of Penn.  I met Dr. Lauren Elman, and after she reviewed my history, studied my test results, and asked and answered a multitude of questions, she made the diagnosis.  I had never heard of ALS and only a couple of times heard of Lou Gehrig’s disease and I was devastated with the diagnosis.  When I learned it was a death sentence, I thought, OK, what can I do change ALS to a treatable or curable disease.

When the opportunity to attend ALS Advocacy Days in Washington, DC came about, I knew it was something positive I could do to raise awareness of ALS and ask for funding to find a cure.  On May 7th and 8th over 1000 people converged on Washington to make our voice heard.  A combination of  ALS patients, caregivers, family and friends, supporters, and ALS chapter personnel gathered to hear about the latest developments in research, listen to inspirational speeches by O.J. Brigance and Steve Gleason (both former NFL players diagnosed with ALS),

and to prepare for and meet with senators and congressional representatives.  I was able to share my personal story in Senator Menendez’s office, Representative Rob Andrews and Chris Smith’s offices.  Personalizing ALS for our congressmen and women makes it real and helps to put a face on the disease and in turn leads to continued or even additional funding for research to help put an end to this horrific disease. It was a powerful and positive experience and I plan to attend again next year if at all possible. 

After returning from Washington, DC, I had the opportunity to travel to the State House in Trenton, NJ, to help declare May as ALS awareness month in the state of New Jersey.  State Representatives Troy Singleton and Herb Conaway invited us to the state house floor to make the declaration official.

I invite any and all of you reading this to join me in being an advocate for all those with ALS, those who have gone before, those who are bravely fighting the battle now, and for those to come.  Together we can and are making a difference by letting our voice be heard and our stories told. 


Click here to join us and be an ALS Advocate!

 

 

 

 

Team Rac-Kuhn
6/6/2013


By Rachel Bingaman

In the summer of 2010, my grandfather, Robert Kuhn, was diagnosed with ALS. As a military veteran, this is not the first challenge he has faced, but it very well might be the most difficult.

Robert grew up in Middleburg, PA and went directly into the Air Force after graduating high school in 1954. He served until 1958, i ncluding three years of serving bases overseas in Germany where he was an airplane mechanic. After he left the service, he married his high school sweetheart and my grandmother, Nellie, and they moved to New Jersey where he worked in a factory. They eventually moved back to Pennsylvania to be closer to their daughter, Sherry, and grandchildren (my brother Robert Bingaman and myself). They have a son as well, Scott, who currently lives in Florida.

We walk in the Bloomsburg, Jorge's Walk to Defeat ALS as part of Team Rac-Kuhn to raise money and awareness for families like ours who are living with Lou Gehrig's Disease. We want to see a cure for this disease and we want the best in patient care for all people living with ALS so that they can spend as much quality time with their families as possible.

Military veterans like my grandfather are twice as likely to be diagnosed with ALS as the general population. After serving their country, they face a new battle, one they definitely did not sign up for, but still one they fight valiantly. We do not yet know why veterans develop ALS at a higher rate, but we do know how we can help, and that is through the Walk to Defeat ALS.

Please sign up for a Walk to Defeat ALS near you. Families like ours are counting on your support.


Summer 2013 Blogs

Kirkin It

Research Update from Pennsylvania Hospital

It's So Easy

Hacking the Brain

Phelan Advocacy

Carol's Team

What ALS Means to Me

Michael's Story

Happy Father's Day

Newly Diagnosed

My Experience in Washington and Trenton

Team Rac-Kuhn


 
 

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.