Walker Handbook. About ALS and Our Organization Walk to Defeat ALS. Our Mission.

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1 About ALS and Our Organization ALS, often called Lou Gehrig s disease, is a motor neuron disease, which causes patients to eventually lose control of all voluntary muscles of the body. Although the cause is not completely understood, a wealth of new scientific understanding provides hope for the future. Every day the resources of the Greater Philadelphia Chapter help patients better manage the impacts of this disease. Our Chapter proudly provides programs and services to over 850 patients throughout eastern Pennsylvania, central and southern New Jersey, and the state of Delaware. The ALS Association Greater Philadelphia Chapter 2013 Walk to Defeat ALS Supporting research worldwide, the ALS Association and the Greater Philadelphia Chapter provides hope for tomorrow. We are improving the understanding of ALS, developing new support systems for patients and working to find a cure. In addition to offering many patient services, the Greater Philadelphia Chapter sponsors numerous events throughout the year, from patient outings to informational seminars to fundraisers. We are proud to be the principal charity of the Philadelphia Phillies. Our Mission Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig s Disease and their families to live fuller lives by providing them with compassionate care and support. Walker Handbook

2 Dear Registered Participant: *New Location for 2013* Seaside Board...Walk to Defeat ALS May 11, 2013 Lakewood, NJ Bloomsburg, Jorge s Walk to Defeat ALS May 18, 2013 Bloomsburg, PA Hershey Walk to Defeat ALS June 1, 2013 Hershey, PA Rehoboth Beach Walk to Defeat ALS September 14, 2013 Rehoboth Beach, DE 2013 WALKS Ocean City Board...Walk to Defeat ALS September 21, 2013 Ocean City, NJ Lehigh Valley Walk to Defeat ALS October 19, 2013 Allentown, PA Greater Philadelphia Walk to Defeat ALS TBA, November 2013 Philadelphia, PA For more information about any of our Walks visit Congratulations on making the decision to participate in The ALS Association Greater Philadelphia Chapter s signature event, the Walk to Defeat ALS. If this is your first time participating, you are about to embark on an exciting and rewarding adventure! If you have participated before, we are honored and excited to welcome you back. By participating in the 2013 Walk to Defeat ALS, you will have a direct and significant impact on the lives of loved ones struggling with ALS every day. The Walk to Defeat ALS program is a great way for families, friends and co-workers to get involved and honor, remember or walk with a person with ALS. We are proud to announce that in 2012 The Greater Philadelphia Chapter's Walks raised almost $1.5 million dollars and had 10,200 people participate! The money raised at the Walks is used to fund programs and services on a local level and to fund cutting edge research on a national level. The Walk to Defeat ALS is The ALS Association's national signature event. Each year, over 150,000 people including ALS patients, families, friends and corporate leaders join together to raise funds in support of The Association s cutting-edge research and community-based patient services programs. In 2012, National Walk totals raised more than $21 million. Now in its fourteenth year, approximately 170 Walks will be held around the country in Now that you have registered, we want you to become one of our top fundraising participants. As a walker, you truly care about helping people who have ALS. Thank you for partnering with us to achieve the ultimate vision: a world without ALS. Did you know the most effective way to raise funds for the Walk is through an campaign? The amount of time it will take you to send an is nominal, but the impact you can make is tremendous. We ve figured out the math. Same Amount of Walking + More ing = Greater Success. Will you be part of the equation? Please know that your participation will have a lasting impact on the lives of many ALS patients. The funds you will collect or personally contribute will increase The ALS Association s capacity to provide vital core programs and services that are so desperately needed by ALS patients and their families. Thank you for joining us for our biggest and most beloved fundraising event! We look forward to walking with you. Please never hesitate to call the Chapter office at GEHRIG 1 for help or more information. Our Best, Allison, Julie, Becca and Ali Walk Coordinators

3 Register and Personalize The Walk website makes registering easy and fast. Team captains should customize a team page to describe their team and invite others to join. It will show the entire team s progress toward the collective goal and list all of the members. Once you have your very own online fundraising web page, you can begin to encourage friends and family to join your team, contribute online through our secure server and start raising funds. Walkers who personalize their pages raise more funds than those who do not. Did you know. that every 90 minutes, someone in the United States hears the words, you have ALS? that military veterans are twice as likely to be diagnosed with ALS! The ALS Association serves approximately 1,800 veterans living with ALS across our Chapter network. that across the country over 23,000 people regularly attend one of the 1,800 support groups organized by The ALS Association. that you re officially a part of the largest nationwide campaign to beat Lou Gehrig s Disease! With over 170 Walks across the country, we raise $20 million annually in order to serve patients battling ALS, support their families and invest in the research that will ultimately find a cure. Don t forget to like us on Facebook. and follow us on Join the Extra Mile Club Take the extra step and pledge to raise $1,000 as an individual or $2,000 as a couple. When you join the Extra Mile Club you will get*: Special Walk to Defeat ALS note cards which you can use to thank your supporters Extra Mile Club Gift I Walked the Extra Mile button and sign on Walk day Recognition at the Walk to Defeat ALS award ceremony on Walk day Your name listed on an Extra Mile Club sign at Walk Start/Finish area Your name listed on the Walk to Defeat ALS website In 2012, the 71 members of the Extra Mile Club raised $191, Make sure your name is included on this impressive list on Walk day. If you did not sign up for the Extra Mile Club when you registered, it s not too late. Call your Walk coordinator to be added to the list and then use our fundraising tips to reach your goal. *To receive the Extra Mile Club benefits, pledge of $1,000 for an individual or $2,000 for a couple must be fulfilled and turned in to The ALS Association office, no later than two weeks before the date of the Walk in which you are participating. In order to be eligible for the Extra Mile Club, walkers must select yes to be a part of the program during registration.

4 Your Dollars at Work Our vision is to not only find a cure for ALS, but to also help those living with the disease lead a productive life. Typical equipment needed for those fighting ALS are: What Your Dollars Will Buy For An ALS Family $4,000 Lightwriter for communication $2,000 Bi-PAP ventilation device $ hours of patient care in their own home $750 i-pad tablet for communication $500 Reclining High Back Manual Wheel Chair with Tilt $450 One clinic visit $300 Van Transportation to our clinic $250 Manual Wheelchair $100 EZ Call Bell and Alarm $50 One hour of in-home care for a patient on a ventilator Your dollars will be hard at work providing care and support for those living with ALS as well as funding important research and advocacy efforts to find a cause and cure for this disease!

5 Fundraising Tip Boost your fundraising efforts by personalizing your webpage. One of the best ways to build momentum is simply by personalizing your webpage. When you share your story, your friends and family are much more likely to support you with a donation. Team Captains - Take the Team Challenge Encourage your team members to register online and fundraise! Any team captain who has at least 10 registered walkers online and a team total of at least $2500 by one week from the date of the Walk in which they are participating will receive a Walk to Defeat ALS gift on Walk day. 1. Encourage your walkers to register online 2. Reaching the $2500 goal is as simple as having 10 people raise $250 each 3. Statistics show that walkers who register online raise the most funds 4. Enjoy your team s success on Walk day Team captain prize can be picked up at the Extra Mile Club table on Walk day. Fundraising Tip Get your company involved in the 2013 Walk to Defeat ALS Corporate Support is the fastest growing component of the Walk program. Corporations and local businesses get involved in the Walk program through sponsorship of the Walk, Pin-Up Sales, Matching Gifts and Corporate Walk teams. If you or someone you know, works for a company that you think might want to get involved in the Walk, please contact Allison at Allison@alsphiladelphia.org or ext. 27. WALKERS WHO SEND S RAISE 3 TIMES MORE THAN THOSE WHO DO NOT Checklist for Success Register online for the Walk. Set a personal fundraising goal. Make your first donation! Customize your Personal Walk Webpage upload photos and tell your story! Conduct an campaign using tools provided. Send letters to all those you know inviting them to support your team. Invite your company, employer, church, synagogue, school, neighbors, friends and community groups to join you! Use social networking tools like Facebook, YouTube, Twitter and others to encourage support. Become a co-captain and share the leadership! Help your team create t-shirts, buttons or a banner to increase your visibility on Walk day. Hold your own fundraising event to raise additional funds. Ask your employer about a Matching Gift Program. Keep in contact with your team captain for updates and Walk details. Get a head start on turning in your donations by sending them to the Chapter office before Walk day. Get your comfy shoes on and Walk to Defeat ALS! Matching Gifts DOUBLE YOUR DOLLARS! Many companies will match their employees charitable giving. Be sure to ask your employer about their matching gift program. And don't forget to ask all of the people who donate to you to find out if they have a matching gift program at their workplace! If your company does have a matching gift program, fill out the forms properly before submitting them to the Chapter office. Visit to see if your company participates. If your company is not listed please talk to your HR department today. ASK A FRIEND TO JOIN YOU AT THE WALK! FUNDRAISING IS MORE FUN WITH FRIENDS.

6 Power in Numbers! A Walk to Defeat ALS team can range from 2 people to thousands of people. Invite co-workers, friends, family, club members, social groups, business associates, vendors, schoolmates and religious groups to join you! Team participation allows you a chance to enjoy each other s company while pursuing a common goal. If you are registered as an individual but want to form a team, contact our chapter office at GEHRIG 1 or by at alsassoc@alsphiladelphia.org and we will assist you. Tips for forming a successful Walk team! Send out s and letters to everyone you know announcing your commitment and inviting them to join you. Include a link to your Personal Walk page in your s and letters. Follow up with a phone call or an to find out who is interested in participating. Ask each person who joins your team to recruit a few more members. Submitting Donations We encourage you to send your offline donations to the Greater Philadelphia Chapter as early as possible so that they are reflected in your team total. You can send checks to The ALS Association, 321 Norristown Road, Suite 260, Ambler, PA Please include a note with the name of the Walk, the team name and the walker to whom the donation should be credited. By including this information, you will ensure that the donation is credited properly. Raise over $200 in 7 days Day 1 Sponsor yourself for $25 Day 2 Ask 2 family members to sponsor you for $20 Day 3 Ask 3 friends to contribute $10 each Day 4 Ask 4 co-workers to contribute $20 each Day 5 Ask your boss to match your co-worker s donations Day 6 Ask your business or place of work to donate $25 Day 7 Share your success with your team, family and friends! Dear Family and Friends, SAMPLE LETTER Three years ago, when I was a sophomore in high school, my father was diagnosed with ALS (Lou Gehrig s disease). Like most teenagers, I had the belief we could live forever and that loved ones would always be there. As Dad grew weaker and weaker I realized how wrong I was. I took extra classes, attended summer school and graduated early from high school so my father could be a part of the audience. At present I am at my second year at The Art Institute of Philadelphia. The many friends of my father know of his amazing accomplishments including establishing clinics and orphanages in Afghanistan, his care of geriatric patients, and numerous awards for his humanitarian efforts. He is known for his witty sense of humor (which I happily inherited), avid love for the outdoors, exercising and genuine altruism. Now, when all we can do is pray and hope for a cure for ALS, I ask that you lend a hand. This year we will be participating in the Walk to Defeat ALS in honor of my father, Dr. John Preston Darby, who has courageously been battling this devastating disease for more than three years. You can help by joining me at the Walk or by making a donation to my Walk team. I appreciate your support and hope that together we may some day find a cure. Thank you, Sarah Darby

7 FUNDRAISE THROUGH FACEBOOK! Tips for Successful Fundraising We have a great tool to help you reach your team and personal goals. BoundlessFundraising will help you connect your Facebook friends to your personal cause. To fundraise through Facebook simply download our BoundlessFundraising application and then watch your donations grow. To download BoundlessFundraising follow these steps: Be Enthusiastic! Excitement is highly contagious and potential sponsors will want to give once they see how passionate you are about fighting ALS. Visit and log into your Walker Headquarters. Click on the link or the Facebook icon to start the BoundlessFundraising application. Be Committed. When you raise funds for The ALS Association, you are directly helping people living in the eastern half of PA, south and central NJ and the entire state of DE. And you are helping to fund research to find a cure and treatment for this disease. Make The First Pledge Yourself. When your friends and family see your name and contributions they will know how serious you are. Learn As Much As You Can About ALS. Call us to receive brochures about ALS and chapter programs. Send s. Send an announcement of your plan to participate in the Walk to your friends, family, business associates anyone and everyone. If you are not already logged into Facebook, you will be directed to sign in. Once you re signed in, you will automatically be directed to a Request for Permission page. Click Allow. Once the application is downloaded, you will have the option to donate your profile picture, share a status update and share your personal story. All money raised through the application will show up on your regular personal and team pages. So download the application now and jumpstart your fundraising! Ask For A Specific Amount. Tell your donors what the average gift is and then ask them to beat it. Ask For Donations On Pay Day. Timing is important. When you ask is almost as important as whom you ask. Update your goal! Did you already reach your fundraising goal? Well then raise it! You can do this in your Walker Headquarters. Updating your goal will make sure that your friends and family still donate to help you reach your goal.