Why is the Walk to Defeat ALS so important to patients, caregivers, friends, and family?
Even more than the sense of community, love, and friendship on Walk Day, your support of the North Jersey Walk to Defeat ALS provides much needed care and equipment to patients as well as advancing research for treatment and a cure for this devastating disease. Each of our Walk Teams have their own unique stories about why they Walk each year. We’d like to share one of those stories with you about Team Circle of Hope who Walk in honor of its Team Captain, Janet Palkewick.
I received my final ALS diagnosis on October 2, 1989. I had no computer to investigate this disease that had invaded my life. My local library had one book on ALS. The ALS Association was a mere 4 years old and the Greater NY Chapter did not exist. There was no chapter clinic, loan closet, support group. Our ALS Walk program wouldn’t be formed until 2000. One doctor basically told my husband and me, yes, you have ALS, nothing I can do for you, go home and live your remaining few years.
So that’s what I did, I went home and lived my life. That one doctor gave me such discouragement that I gave up on doctors or seeking any further information or advice. I kept busy being a minister’s wife and raising four children (I was pregnant with #4 when I was diagnosed.). In 2006, a friend of my sister’s, invited us to the Saddle Brook Walk. Until then, I had only befriended one person with ALS. The Walk really opened my eyes! I met and spoke to other PALS and their families. I was even invited to help cut the ribbon. My family and I were welcomed into the ALS community with open arms. This one event changed our lives!
My family Walk team, Circle of Hope, will participate in the Walk Program for our 11th year in 2017. Since that first Walk, we have had so many opportunities to spread ALS awareness through our fundraising. My team held our 7th Annual Clothing Collection in October and a LuLaRoe fundraiser in November. We sell candy bars through the year and sell ALS baseballs too. I am a firm believer in fundraising all year long. After all, PALS and their families need help all through the year so why not fundraise and spread awareness all year.
The North Jersey Walk goal is $300,000 but we’re only 79% there. That’s an amazing accomplishment but I’m selfish. I want more for my fellow PALS and myself. I want more funds for clinic services, support groups, the loan closet and needed equipment. My daughter and I have gone to DC for ALS Advocacy Day 7 times and I will continue to go, speaking for all those affected by this horrible disease. But advocating takes money too. One drawback with being involved in the ALS community is losing PALS, PALS I’ve come to know and love. I am determined to do all I can to raise funds for research so someday soon I don’t have to say goodbye to another fellow PALS.
Won’t you please help?
Help with more awareness, more research, more advocating…more money! Let’s end the year on a high note!!
Circle of Hope