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DC/MD/VA Chapter

Washington, DC Walk

ALS "WON'T GET FOOLED AGAIN'

Thank you for helping me reach my Walk to Defeat ALS® fundraising goal or to join me in my walk! This is an exciting opportunity for us to work together to support those affected by Lou Gehrig's Disease and to spread awareness of the urgency to find treatments and a cure. 

My story starts when I was on vacation in Florida and went out to do my favorite thing while on vacation, explore the area with a run. When to my surprise I was unable to lift my right leg, it felt heavy and clumbsy. I dismissed it as something that had to do with traveling, dehydration, lack of sleep. But that was the beginning to my nightmare. Fast forward through many appointments with neurologists/neurosurgeons that all had diiferent opinions but all said "no" this is not ALS. Until an appointment with yet another neurologist on March 8, 2017 at 4pm when infact is was ALS. My life stopped at that moment and will forever never be the same. I'm a shell of who I was: social, happy, laid back, busy with a million projects I knew I would never finish but had no idea how quickly that would come to an end. I'm still physically able to do most things it's just the apathy that consumes me making it a chore to just gey out of bed in the morning knowing theres nothing left to get excited about as the reality of my short destiny is a constant in my psyche. I used play tennis 5 times a week, taught tennis, join my friends at spin or pilates or try out any new classes at our gym. Tennis and running, my two favorites are out of the question. Most other things I can do, just slower. I'm hoping if I ever get up the will I will get back on my bike exploring the beuatiful prarie paths I used to ride and take in their natural beauty, I'm not sure how I will percieve them now but I know it won'nt be the same. Whatever receptors in my brain that interperated everything as positive and beautiful are permanantly void. It's hard to walk my dogs and brings much saddnes looking around the neighborhood at everyone living their seeemingly perfect lives and wondering "why me"?

I'm being honest, I'm not like all those ALS patients that talk about appreciating the now, living each day by day and just being aroung friends and family as long as they can and that brings them comfort. I want to do everything a can so nobody else has to suffer this awful ending. I am a healthy (other than the dying from ALS part) 51 year old that never could ever comprehend this could happen to some one as heath contientious as I was. I am mad and going to fight to do all I can to get any drug or therapy that could help me and the 5,600 diagnosed this year. 

*We are grateful for the FDA's approval of Edaravone, but we don't know how soon this will reach the affected patients, a population that one day can matter with this agressive disease. This is a drug that slows the progression ALS, it is not a cure. There is still so much to been done to completely wipe this out! We need to keep the pressure on, keep this story in the forefront to encourage biotech and pharmaceutical companies, the FDA and our congressional representatives that this is important to us. Since my diagnosees I've learned of three others that are connected to my circle of friends. 5,600 diagnoses a year is considered rare, I disagree and I'm sure all of you touched by this one way or another agree! Let's continue our fight to change dying from ALS to living with ALS.

UPDATED MAY 30th

Sorry for the confusion if you see I have two donation pages/walks. I am still doing the DC walk, but also participating in the local walk. Donations can be made to either and you can participate in the Cantigny Walk without making another donation. Just join my team under the same name, "Won't Get Fooled Again". It is currently under Michelle Sharples as Captain but that will be updated.
WALK CHECK-IN: 8:00 AM - 10:05 AM
WALK STARTS: 10:00 AM
LOCATION: Cantigny Park
DISTANCE: 1.5 miles Walk to Defeat ALS Staff
More than just a few-mile trek, the Walk to Defeat ALS® is an opportunity to bring hope to people living with ALS, to raise money for a cure, and to come together for something you care about. The Walk to Defeat ALS® is The ALS Association’s biggest annual event, which raises funds that allow our local chapters to sustain care services and support research for much of the next year.

 

Please support me, enlist your family and friends and join me for this March on Saturday, October 14th 9am, 3 miles in Washington DC.


ALS "WON'T GET FOOLED AGAIN' - Join Team Raised
LEVEL 9 FUNDRAISER Helping Hand WON'T GET FOOLED AGAIN $30,283.11
LEVEL 2 FUNDRAISER Helping Hand Kevin Berry $800.00
LEVEL 2 FUNDRAISER Helping Hand Nancy Bolliger $575.00
Haley Bookout $0.00
Helping Hand Renee Bookout $250.00
Helping Hand Adri Boudeman $100.00
Helping Hand Randy Brouckman $275.00
Helping Hand Diane Fonte $250.00
Helping Hand Mark Goble $100.00
Helping Hand Michelle Hejna $150.00
LEVEL 1 FUNDRAISER Helping Hand Karen Herbstritt $370.00
Kathleen Holmberg $400.00
Helping Hand Kristen Janowicz $250.00
Lauren Janowicz $0.00
Michael Janowicz $0.00
Natalie Janowicz $0.00
Doug Johnson $0.00
Emily Johnson $0.00
Helping Hand Madeline Johnson $100.00
Nancy Johnson $0.00
Helping Hand Cathy Kakuska $100.00
LEVEL 2 FUNDRAISER Helping Hand Alison Kaminky $750.00
Helping Hand Rosemary Kleiser $100.00
Helping Hand Danielle Krabbe $20.00
Megan Lassen $0.00
Helping Hand Nancy Lassen $100.00
S. Todd Lassen $0.00
Todd Lassen $0.00
LEVEL 2 FUNDRAISER Linda Lease $550.00
LEVEL 2 FUNDRAISER Helping Hand Paul Melkus $500.00
Helping Hand Kelly and Joe O'Malley $200.00
Helping Hand Skip Redner $50.00
Helping Hand Kim Richards $50.00
LEVEL 1 FUNDRAISER Helping Hand Jeannne Schneberg $350.00
Helping Hand Lisa Schrage $100.00
LEVEL 1 FUNDRAISER Helping Hand Michele Sharples $350.00
Seth Swary $0.00
Helping Hand Ryan Thier $20.00
Susan Vance $0.00
Helping Hand Eileen Wargo $100.00
Helping Hand Molly Weslow $20.00
Denotes a Team Captain
MT Pharma Quantum - National Sponsor

Cytokinetics - National Sponsor