ReZoom

Region #3: Las Vegas, NV

ALS of Nevada assists people living with and fighting ALS and supports their families. They are dedicated to research to find the cause and cure for Lou Gehrig's disease, a disorder that attacks certain nerve cells and pathways in the brain and spinal cord. ALS of Nevada aims to help through support, education, research and awareness.

Winning Regional Essay

"When my brother was diagnosed with ALS in 1994, we had nowhere to turn. We didn't know anything about this dreadful disease and had to figure out everything for ourselves - how to get Social Security disability, how to help my brother eat, and how to help him do the most basic activities until he was no longer able to do them for himself at all. It was a terrible time of helplessness and despair. I am so thankful that ALS of Nevada exists now to help out others that are forced to travel this same dark journey."

"The unbelievably kind and compassionate patient services coordinators help victims and their caretakers with the latest information, provide assistance in dealing with bureaucracies, help them acquire the best aids to help at each stage of the disease, and give comfort and empathy to these patients and loved ones who SO badly need it. Most importantly, ALS of Nevada is THERE for PALS (Persons with ALS) and CALS (Caretakers of ALS victims) - whenever a patient needs them, whenever a caregiver has a question, now there is a place to turn, where patients and their families can find knowledgeable and profoundly concerned people to help them in the most fundamental ways. And now ALS of Nevada operates a clinic so that patients can go to one location in Las Vegas, and be seen and helped by every applicable discipline - pulmonologist, respiratory therapist, neurologist, etc."

"Unless you have been through the trauma of helping a dearly loved one who is at some stage of incapacitation get dressed, get into a vehicle, drive or fly great distances for ALS-specific care or go through the process several times a month to visit all of the local physicians for various needs, and return home utterly exhausted (which only serves to further exacerbate the disease) can you truly appreciate how marvelous the clinic is."

"I am proud to be on the Board of Directors of ALS of Nevada, in memory of my brother, Jeff Partridge. I pray that a cure will be found soon, but until there is, I thank God for ALS of Nevada and its staff, who are providing help and comfort to those who need it so desperately. My brother suffered through many indignities and much discomfort that we can now help patients deal with so much more effectively."

If They Won the $100,000 National Award ...

"Upon winning the $100,000 from the ReZoom.com "A Better World Program," our goals will be to enhance current services throughout Nevada and provide new services to all Nevadans and their families living with ALS."

"Presently we have 70 patients on service throughout Nevada, with only two full time employees and one part-time employee seeing all these patients. Our first goal is to hire a patient service coordinator (PSC) will be a licensed nurse for Northern Nevada. We are only able to see a patient in Northern Nevada once a month."

"Our patients in the north part of the state will benefit greatly having this individual in the area. The new PSC will provide an immediate home visit to the recently diagnosed and the ones that already afflicted by this disabling disease and do monthly visits as further needed. We supply families with donated equipment from our loaner closet, but we just do not have enough supplies to give every patient and all we can do is work so hard doing fundraisers to buy much needed equipment to help our ALS families."

"Regularly meet with local, private practice Neurologists to develop collaborative efforts for ALS patient care. In addition, the PSC will be responsible for promoting ALS of Nevada by working on additional fundraising and working with the media in Reno, Nevada. Work directly with Neurologists and their staff in Reno so that they are aware of the services we provide to all ALS patients. With the addition of a new employee, we will be buying a computer, fax, and phones and setting up a much-needed office in Reno."

"After establishing a new office in Reno, we will be hiring a PSC for the Las Vegas area. A licensed nurse will work directly under the supervision of the Director of Patient Services. The PSC will offer the same services that are currently offered, only be able to cover more patients each week with this additional employee. Currently the Director of Patient Services sees all patients in the southern part of the state and travels to Reno every other month, backed up by the Executive Director. These two new positions will relieve the Executive Director and she will be able to concentrate on fundraising and administrative duties."

"We will be adding much needed equipment to our loan closets in both the north and south part of the state. We provide ADL's (aids for daily living) free to all of our patients. The many supplies we provide to ALS patients are expendable and therefore, we do not get them back from the families. These ADL supplies include drinking straws, tubing, long handled combs, and brushes, long handled sponges, cups with mouthpiece, non-slip TheraTak used under plates and saucers, one-handed fingernail clippers, and emery boards with suction cups, all of which enable the patients to be independent a little longer. Another important ADL we provide to patients who cannot afford them are Dentips, disposable soft sponges on the end of popsicle-type sticks, for patients who can no longer brush their own teeth."

"One of the most important pieces of equipment our patients need is a seat cushion for their wheel chair. Medicare and most private insurances do not pay for these. Because folks living with ALS cannot reposition themselves, it is imperative that they have good body support and a pressure-relieving cushion to prevent ulcers. Our patients need to get out of the house, which means a special constructed ramp for their homes not only for safety reasons but also to be able to go somewhere. Private insurance or Medicare does not pay for these ramps. A wheel chair ramp can cost up to $3,000 depending on the dwelling. One challenge to living with ALS is finding appropriate transportation. We hope to purchase a used wheelchair accessible van to help our clients for both everyday needs and special excursions."

"Often family members donate power wheelchairs that their loved ones no longer need. It is up to us to keep these chairs in working order so that we can loan them out to patients who are not able to get their own. These power chairs have two batteries, each that cost approximately $300. The joysticks and tires may have to be replaced. ALS of Nevada contracts with a company to do this work and also pick up and deliver these chairs."

"We will be adding books and videos to our current library. We offer many publications to help our families through this time of need including children's books, cookbooks, and medical resources. We will be reprinting our Resource manual at the end of summer 2007. This manual given to all new patients and families; it explains the disease thoroughly and used for all our in-services. With the help of one of our donors, ALS of Nevada plans to make a new video explaining our programs that we can give out to local doctors and use at in-services."

"This fall we plan to conduct a full day educational symposium in Las Vegas. Free to all attendees. In the morning session, we will have speakers that are experts in the field of ALS, doctors, researchers, pulmonologist. After lunch, there will be "break-out sessions," where patients and families will be able to ask questions of all the speakers. There will be sessions with Occupational Therapist, other ALS patients and others."

"We will be implementing a new program in the fall of 2007 to inform every Neurologist and doctor in Nevada of our presence. This plan will consist of brochures, videos and office visits by the Executive Director and Director of Patient Services. It is essential to the ALS community that every doctor know ALS of Nevada is here to provide services to patients and families with Lou Gehrig's disease."

Charity Goals

• To help the ALS patient and family to live as full and as normal a life as possible

• To aid patients through the loan of equipment or by other means

• To serve as a liaison, linking the ALS patient and family to available resources and information

• To educate and inform the general public as to the nature of ALS

• To encourage and support research for the prevention, alleviation, care, treatment and cure of ALS

• To increase awareness of ALS in all levels of government in an effort to expand government support of research and elicit programs to make treatments and care accessible and affordable for all ALS patients.