 Volunteering With Extra Hands
ALS Family Registration
About Extra Hands for ALS
 Frequently Asked Questions
What Is ALS?
Extra Hands In The News
Our Team
Board of Directors
Careers With Extra Hands
Where Your Donations Go
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OUR MISSION
To instill the importance of community service and develop leadership qualities in young adults by uniting them with people who have ALS and their families.
PROGRAM OVERVIEW
Through Extra Hands for ALS, high school and college students volunteer
to help people with ALS and their families by doing chores and errands or
just providing company for the homebound. Students also organize and
participate in ALS public awareness events designed to teach their peers
and communities about the disease.
Student volunteers complete a training program, and then are placed on a team with another volunteer and
an adult mentor, usually an experienced adult volunteer or ALS survivor.
In the home, students provide "friendly visitor" services such as
helping with mail or email, housecleaning, getting groceries, doing yard
work, reading aloud, or simply providing company to the patient. Once
per semester, students participate in a public awareness event such as
organizing an ALS Awareness Day at their school or running an
information booth at a community fair.
An adult mentor works with each team to guide and coach the student volunteers and to
serve as an additional source of aid for the ALS family. Mentors visit the families
once each month, pitching in with whatever needs to be done and providing emotional
support. They keep in frequent contact with everyone on the team to ensure all goes
smoothly, and they work with the student volunteers on their public awareness initiatives.
Mentors also function as ambassadors for Extra Hands into their own personal and
professional networks.
Extra Hands for ALS is designed to benefit people with ALS, volunteers, and the
ALS community at large. Through this program, young people have the
opportunity to connect deeply with an issue and the people it affects,
to become involved in their communities, and to explore possible career
paths in healthcare and social services. ALS families directly
benefit from the services of the volunteers. Additionally, the program
is intended to expand the circle of people who are actively involved
with ALS and thereby unite and invigorate the nationwide ALS community.
Extra Hands for ALS is operational in many locations. The
program will be rolled out nationally, so be sure to let us know if you
would like to have it in your area.
WHAT IS ALS?
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Multimedia Graphic
CLICK HERE
to see a multimedia presentation prepared by the Patient Education Institute for MEDLINEplus.
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Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease, is a rapidly progressive,
invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling
voluntary muscles. Unable to function, the muscles gradually weaken, waste away, and twitch. Eventually,
the ability of the brain to start and control voluntary movement is lost.
ALS causes weakness with a wide range of disabilities. Eventually, all muscles under voluntary control are
affected, and patients lose their strength and the ability to move their arms, legs, and body. When muscles
in the diaphragm and chest wall fail, patients lose the ability to breathe without ventilatory support. Most
people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However,
about 10 percent of ALS patients survive for 10 or more years.
Because ALS affects only motor neurons, the disease does not impair a person's mind, personality,
intelligence, or memory. Nor does it affect a person's ability to see, smell, taste, hear, or recognize
touch. Patients usually maintain control of eye muscles and bladder and bowel functions.
As many as 30,000 Americans have ALS, and an estimated 5,000 people in the United States are diagnosed
with the disease each year. ALS is one of the most common neuromuscular diseases worldwide, and people of
all races and ethnic backgrounds are affected. ALS most commonly strikes people between 40 and 60 years of
age, but younger and older people also can develop the disease. Men are affected more often than women.
In 90 to 95 percent of all ALS cases, the disease occurs apparently at random with no clearly associated
risk factors. Patients do not have a family history of the disease, and their family members are not
considered to be at increased risk for developing ALS.
OUR VALUES
Many disease-oriented charities appeal to the public's sense of pity to find support and common
ground. At Extra Hands for ALS we think this is a flawed approach that serves only to isolate
further those affected by ALS. We operate according to these values:
Courage, Perseverance, & Hope
The Jack Orchard ALS Foundation and Extra Hands for ALS were founded to combat the sense of
hopelessness that accompanies a diagnosis of ALS. Instead of believing "there's nothing you can do",
we will work to change the picture: bringing relief to one ALS family after another; educating our
communities about what ALS is and what can be done about it; showing young people the power they
possess to make a difference; funding the development of research that can help ALS patients live
longer, better lives; and fundamentally altering the landscape of rare disease research in our
country. Jack Orchard himself embodies courage, perseverance, and hope as he turns his personal
struggle with terminal illness into the opportunity to change thousands of lives for the better.
Every person who works with the Jack Orchard ALS Foundation and Extra Hands for ALS also embodies
these principles: by turning Jack's vision into a working, sustainable reality.
Respect, Responsibility, & Compassion
These values express what we expect out of the quality of our work and the tone of our interactions
with others. As we raise hopes, it is our responsibility to do what we can to meet them. We can
never lose sight of whom it is we are serving: a diverse community of those affected by ALS (whether
as patients, families, volunteers, or foundation staff), who have put their trust in us to make a
difference. These are the values that tell us to work efficiently, to pledge funds wisely, to be
inclusive and cooperative, and to structure programs that both serve people with ALS and support
volunteers.
Believe!
"Believe!" is the one-word motto of the Extra Hands for ALS program. This word encapsulates our
optimism and our passion for what we are doing. It also emphasizes the personal connection - whatever
it is that resonates for each of us, whatever hope we harbor - that inspires any one of us to join the
fight against ALS. This word honors each of our individual motivations and the way they are united in
our common cause.
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