Speech delivered June 30th 2010
ALS Open golf tournament, Albany NY.
Raised $101,000. for local ALS clinic

This is the 20th anniversary of this A L S Open. I am compelled to thank you for so much . With out your compassion and generosity; I may not have been able to tolerate the every changing terrain of this journey. Certainly the Lewis Golub center would not exist today. Scattering suffering A L S families adrift among an ill-equipped medical community. An A L S diagnosis is not only scarey for the patients , but also for our physicians . Doctors are generally not familiar with all the variations of progressive symptoms. The frustration of incurable conditions can cause the diminishing quality of care. I dare say we are categorized and cast off. The center is a life raft in turbulent sea; and YOUR keeping us afloat.

I wish to express our appreciation by way of sharing some personal experiences.

Those who do not yet know me personally; I am your peer. My name is Andrew Ragan. Just 4 years ago I was actively participating in life as a: husband (been together 22yrs), father, community supporter, and professional conducting business globally. With 80% travel it is safe to say; I am familiar with personal sacrifices and the stress of meeting performance obligations. It is from this perspective I am asking you to help the Lewis Golub Center meet their financial needs. We are Grateful to you for taking time out to learn more and offering your financial support to the Center today.

What they do for families facing over whelming ever progressing challenges makes them extremely deserving.

I have been called courageous, brave, strong, and told that a cure is just around the corner. The truth is far from reality. The center provides life enhancing services we draw our strength from.

For us the center’s mission bridges a gap and consolidates vital resources. Such as adaptive expertise, medical guidance , emotional support for both patients and our caregivers.

I still remember walking in years ago; being honestly and compassionately told the truth of what to expect and most importantly that we were not going it alone. The loneliness of this disease could be overwhelmingly under estimated.

Thanks to your continuous support to the center; I can be part of our community and my families life’s for a bit longer. Your support has allowed me to see my boys grow through participation in sports, cub scouts, religious & scholastic milestones. Now: Participation with family time becomes the most valuable asset we try to accumulate.

Professionally, I would like to share with you a personal revelation. I never truly understood the impact of the corporate community service programs: I routinely sponsored. Years of posing behind large poster board checks as a benefactor. Blindly already thinking about my next business challenge. Never thinking I may be a beneficiary of such an event . I DO NOW!

Your contribution directly allows the center to operate; providing guidance for a dignified life with A L S.

The List of services is extensive some of what they do all in one location is unique. Especially important for people with A L S; considering their travel difficulties. Always available to help out with the crazy situations that we get ourselves into. The centers Medical guidance such as feeding and respiratory solutions are planned. Adaptive equipment is discussed and coordinated with vendors.

They have a vast loaner “closet”. It is more like a warehouse full of: used chairs, walkers, lifts, and similar supporting devices. Depending on ones perspective. Viewing this chuck full closet is a stark reminder of my “new peers” that have already yielded to this disease. Although; I will return the favor, I have no intention of parting with my stuff any time soon. Some would say how courageous, but those who know me intimately think I am just a hoarder.

Visiting the center always starts with a bit of trepidation. Kelly always states: “remember they are here to help.” Indeed they are, so much that they are weaved into the fabric of our lives; and YOU are the thread keeping us together. We could not imagine not having this proverbial security blanket.

The real courage is displayed daily by our care givers. They are Unsung heroes who would be warn down to a stump from the daily grind. If it was not for the centers after hours support groups. Offering counseling on how to cope with the strain of their challenges; and what is appropriate to tell our 6 & 8 year old sons about their father.

Scientific research hasn’t produced any comforting results. Especially if we consider the amount of time and money spent since either identifying or immortalizing this condition. I would venture to say you collectively have helped more patients directly than any other A L S campaigns. The research efforts will pay off someday until than; you are truly appreciated and needed. It is grass roots efforts such as this event that keeps up the momentum. A L S research really needs to become a crusade not career paths.
Your involvement is a call to arms. Thank you!

This is a perfect example of the difference your community involvment can make- it makes us feel less alone in our fight. It touches us more than you may ever know, in fact it touches people you will never know. So Go on with your bad self and get involved!
Anne Marie