Research Update and Awards Luncheon Honorees

Research Update

Dr. Richard Badlack spoke about his current research on ALS reversals, to see the video of his talk please visit our YouTube page here.

Sunrise Award - Steve Anoia

In the Spring of 2017, I started to notice trouble moving my tongue which then progressed to slurred speech. After seeing multiple negative test results, the list of possible causes of my symptoms was scary to say the least. This would span over the rest of the year and progressed to trouble swallowing and weak facial muscles. Thankfully in January of 2018, I had an EMG and the results prompted my doctor to refer me to Dr. Terry Heiman-Patterson and the team at the MDA/ALS Center of Hope and ALS Hope Foundation. On February 8th, a day after my 39th birthday, I was officially diagnosed with ALS.

The thing that I love most about the team there is that many have them do what they do because their families were touched by ALS or other hardships that gives them the perspective to help their patients and their families. The team is more like a family than a medical facility. Anyone of them is a text of email away for anything that I or my family needs. I feel blessed to have them in our life. I can go on forever on how each of them has and will continue to be there for me and my family. Thank you to my family at ALS Hope Foundation, we love you guys! And to all the PALS out there…never give up HOPE! #HOPEisontheHorizon #betheHOPE

Courageous Heart

Jack Buzby

I was born February 14, 1953 and 5 siblings, 3 sisters and 2 brothers that keep a check on me. September 2014, my wife, Sandy, noticed me limping and set up an appointment at Rothman Orthopedics. The doctor there knew it wasn’t an orthopedic problem and referred me to Jefferson neurologist who saw me in October 2014, and diagnosed me with having ALS, telling me that I had ALS and had 3 to 5 years to live with no cure. It was devastating news that I had to go home and tell my family, but the best thing that Doctor did was to give me Dr. Pattersons phone number. I now see the team at ALS Hope Foundation every 3 months which helps me keep a positive attitude as much as possible.

I have an amazing family, friends, and friends of friends who have really stepped up and helped us along the way. As we know as the disease progresses I can’t do normal everyday things. Sandy, my wife, is there if I drop something on the floor she will get as I can’t, just washing and showering would be impossible without my wonderful wife Sandy. Paul and Kevin, my sons, and my daughter in law, Michelle, are always there when I need them, they’ve had to lift me from a chair at times when I got down but couldn’t get back up, same with my brother-in-law, Scott who has helped me out getting up and down steps. My sisters, patty and Sharon are always there to support me and bring lots of yummy treats to eat! I am forever grateful for all the help that family and friends continue to give me. Then there is David, my 9 year old grandson, who when I’m with him always makes sure I’m okay, asks me if I need water or if I’m feeling okay, opening doors for me. Nothing like a hug from a grandchild. In closing, we hope for a cure soon.

Frank Donnelly

I don’t feel I am courageous for having ALS. Before I was diagnosed with ALS I was very active with high energy and very involved with my family and career in insurance. Getting involved in with the clinical drug trial helped me focus some of my energy that used to go into my work and daily living. It feels great to be able to help others living with ALS and know that someday my contributions might help others.

My journey with ALS began in 2017 when I tripped over a curb at a donut shop and started experiencing ankle pain in December. My wife, daughter and I had a trip planned and went ahead with our trip, and upon returning I visited a podiatrist to see about the pain, I was experiencing and began physical therapy where they noticed a tightness in my leg muscles. After noticing a referral to a neurologist was made. In April of 2018, they diagnosed me with ALS and referred me to the MDA/ALS Center of Hope at Temple; where I receive excellent support and have the opportunities to participate in drug trials. The clinic team may not always tell you what you want to hear, but they do tell you what you need to hear. I participated in a drug trial through the clinic; though I did not respond well to the treatment, I think It is important to participate because unless you try, you don’t know if it will work and it may help find a treatment or cure for someone else.

Greg Heydet, Sr.

I was diagnosed with ALS in October 2009 and have been with ALS Hope for over 5 years now. From Day 1 the folks at the MDA/ALS Center of Hope have made me feel special and important. I dearly love the staff, in part because it’s all about me there. They keep me up to date with everything that is going on and what’s out there for my condition. We all laugh and joke a lot which relieves any tension. I look forward with seeing them every 3-4 months. ALS hasn’t stopped me from doing the things I love such as practicing my faith and coaching high school and travel softball. I do my best to keep active and maintain a healthy lifestyle. This involves taking various supplements, exercising and stretching daily. I also have my beautiful wife Cindi and my 6 kids and 7 grandchildren. I truly feel that all of this has kept me going. I hope you will consider supporting Hope Walks for ALS this year. We rely on your generosity to ensure people with ALS have access to the important services at the Center of Hope and we need your help to keep hope on the horizon for other families living with ALS. Thank you!

Edwin Murphy

Barbara Smith

We became familiar with ALS and the Hope Clinic about ten years ago when our son-in- law was diagnosed with ALS. We attended a support group in Lehigh Valley Hospital, where we met many struggling with the disease. We admired their courage and sense of humor. We went on several Walks and raised money for ALS research, etc. About 18 months ago, the family and I were shocked to learn that I, too, had ALS. We were devastated. I had had several major surgeries since 2013. After one of them I noticed I had difficulty in speaking. At first it was hit or miss (sometimes normal, other times garbled). I underwent several tests and saw several doctors. My daughters encouraged me to see Dr. Patterson at Hope. I was then diagnosed with PLS, but that was changed to Bulbar ALS. It affects my speaking, eating, and swallowing. Needless to say, socializing is a challenge; but I’m determined always to be the best I can be, and I’m grateful for the love and support of my family and friends.

Dr. Robert Sinnott

I would like to thank Dr. Terry and her TEAM for honoring me with this award, which I gratefully accept. Unfortunately, Trish and I are out of the country and can’t join you today but my children are in attendance and will accept this award on my behalf.

We met Dr Terry and all of our friends at the ALS Hope Foundation in early 2018 when the official diagnosis of ALS was confirmed. Hearing the challenging news was devastating and yet, we left Temple hospital with a confidence that we were with the best TEAM for us. Dr Terry is a wonderful person and physician whose compassionate nature is a gift to all of us. Even with the demands of a busy clinical practice, she and her exceptional team of therapists offer excellent care, education and support.

They are keenly aware of the fragility of life and the utter lack of control their patients experience on a daily basis. To all of you, I say thank you.

Amidst all of the struggles, the worries and physical changes that this diagnosis introduces into your life, the knowledge that HOPE still exists, provides for me an energy that makes living each day possible. I thought about the meaning of the word HOPE and decided to take each letter of the word and break it down even more. I came up with meanings that I’d like to share with all of you. H is for healing. That’s my goal—miraculous healing for all of us. O is for the opportunities that exist to increase ALS awareness and fundraising efforts. P is for the persistence necessary to continue clinical trials in the academic world of research and for the very important daily activities in our own lives. Finally E. It is for the energy required by me to meet the new physical and emotional demands of the illness and as importantly, for the energy required by a caregiver and loving family members and friends and for the people, like those in the ALS Hope Foundation who remain committed to finding a cure for this relentless disease.

As a physician, I have always assumed the role of healer and it is difficult to find myself in this new position. But as with any new journey, you learn things about yourself and for me, it was two important realizations. First, I have learned to accept help. And second, I have seen such goodness in people that I am inspired to fight everyday.

ALS is a cruel disease because it is a taker. And so, as you move through life, consider two things. Be a giver and not a taker and love harder. When you do, life becomes much more meaningful.

To my wife Trish, my children, Matthew, Patrick, Stephen and Kathleen, and my loving family and friends, I offer my daily thanks for your continuous love, support and optimistic spirits. You certainly make this journey a little easier.

Theresa Struble

Theresa Steinhauser Struble was born in Philadelphia, daughter of William and Marie Geppert Steinhauser, sister to Bill, John and David, loving mother to John and sister-in-law, aunt, cousin and friend to so many who loved her. Theresa attended Corpus Christi Catholic School, graduated from Lansdale Catholic High School and went on to attend Kutztown University. She enjoyed many years employed at Snap-on Tools and Movers Specialty Service. In all walks of her life, Theresa formed life-long friendships and amazing memories for all those she left behind.

Theresa’s son John, is her greatest accomplishment and was her greatest source of pride and joy. Even as she battled ALS it did not distract from her love and care for him. Raising John was a journey she relished and embraced directing her full measure of love and attention to ensure John a wonderful life. Her loving and loyal dog Baer rounded out a household that she held dear.

Theresa loved life! She was a free spirit who enjoyed travel, music and spending time with family and friends. She especially enjoyed traveling to coastal locales including Hawaii, Aruba, Key West and longtime yearly summer vacations with family in Ocean City, NJ. Her choice of destinations is not surprising considering her perpetual sunny disposition. Her love of music, especially the Grateful Dead, was a source of joy and peace she loved to share. Even after her diagnosis in January 2017 with ALS, it was a rare moment that she did not have a smile on her face. The large group of family, friends and coworkers that gathered at the 11th Annual Hope Walks for ALS in September last year, to support Theresa and her wonderful team at Temple, was a living testament to the lives she touched and enriched with her presence. She is dearly missed by all who knew and loved her beautiful spirit. “Love will see you through.”

Awards Cont.