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Some Examples Of Who We've Helped


I received a grant application from "John Doe" today. John is vented and incapacitated. He lives with his wife and three children. His is the same tired old story played out in family after family. "We unexpectedly lost a family provided income of $600/month starting this past June. We have been struggling ever since mainly because this was a good portion of our family's food budget which includes 3 daughters (15, 8 & 6). We're currently down to $50 to feed our family the rest of this month and are especially concerned about next month w/ high electric bill & back to school expenses. I'm sure this is just the tip of the iceberg.  ALSGA will take care of this family.

 

 

Bruce Day lives with his elderly parents in San Marcos, Ca. He was diagnosed just last February 2010. Bruce has a Very aggressive form of ALS.  He had a chance to go on a trip up the California coast with friends.   Here's how he put it. "My ALS is fast progressing and this is a chance to travel one last time with friends who will travel with me and watch over me, every day it gets harder and harder to do the little things like cut my own food.   It will allow me to see relatives and sights that I have not seen in 40 years, Pismo, Hearst Castle, Big Sur, San Francisco and places north. I have not been to Yosemite since I was 10 years old and have not been to Disneyland in almost 30 years"

 

 

Don Jimersom was diagnosed September 2006. He lives with his wife Cindy in Monroe, Georgia. ALSGA started looking for a wheelchair van for them 2 years ago.  We found a few,  but they weren’t appropriate.  You don't want a van in Georgia without air conditioning. Don finally reached the point that the van became an absolute necessity. They found one on their own, but it needs modification. That's where ALSGA comes in.

 

 

Crystal Rutherford lives in West Virginia with her husband Charles. She has advancing ALS. He has two malignant brain tumors. They need a vacation with their family. They now have five plane tickets to whisk them away with their family to Costa d'Este Beach Resort. If not now, when?

 

 

Kay Marie Bowers husband has ALS. They live in Fargo, North Dakota. As usual, this disease has been financially devastating. Tragically, her baby grandson in San Francisco recently passed away.  She needed to get there to be with her daughter and attend the funeral,  but didn't have the funds to do so. ALSGA will take care of it.

 

 

We received the following message from the wife of Joseph Honan living in Auburn Washington.  "My husband was diagnosed with ALS just before he turned 50. We have six children. He is at this point in his life totally disabled. He is only able to move his eyes. The bills are so overwhelming that I'm selling all our furniture and any jewelry or whatever is sellable just to keep our power and water on and buy groceries. We have so many bills that what we have coming in does not cover what we need to send out. My Group Health insurance for myself and daughter was almost stopped unless I paid the last 2 months plus this month by the 7th of this month. That was very hard, and put us even further behind on our bills. Now my Gas is threatening to be turned off, as well as a few other things. I can't let the power bill get turned off because my husband depends on electricity to run his ventilator. So I worry about all our bills plus all the collectors that call our home from sun up to sun down trying to get money from us.  It's a vicious cycle and I'm lost and need desperate help, any help."   ALSGA will take care of the Honans.

 

 

"The Happiest Place On Earth" Alan Sippola, June 4, 2010. And he wasn't talking about Disneyland. He was talking about Alta Manor Assisted Living. He's the veteran about who I posted yesterday. I spoke with him today. His comments follow. "This is the happiest place on earth. I love it here. Everyone is so nice. They take me shopping and so much other stuff. I don't have to worry about eating, getting dressed, using the bathroom, staying clean, or getting coffee Thank you Thank you Thank you. This place is great. This wouldn't have happened without you. You really did it. I can't believe it. Thank you Thank you" and on and on and on.

 

 

Alan Sipolla  lived alone and never had a family. His arms were almost useless and his mobility was minimal. He was forced to eat by sticking his face into his food, like an animal.  I called his VA social worker and asked if she knew how he was living.  She really didn't know. I told her he could not live alone and needed an assisted living facility. She told me it could take a year before they reviewed his application.  I went ballistic.   ALSGA got Alan 120 hours of home care so he could live like a human being. I then left the very real impression that if Alan was not in an assisted care facility when his home care grant expired,  all hell would break loose.  Within a week, Alan was moved to an assisted care home.  Its a real home. Clean and comfortable. When I called him he was very happy there. If there can possibly be an upside to ALS, it's this. For the first time in his adult life, Alan will be living together with other people. He won't be lonely anymore.

 

 

Annie Sullivan is 25 and from Montana.  She has twin brothers, 29 years old, both with ALS. She also has custody of two younger brothers, now 7 and 12. Her dad died 5 years ago from ALS and her mom soon after. The family was scattered to various relatives and nursing homes. She wanted them all together and rented an inexpensive house. She became the full time caregiver to incapacitated twins and 2 young children. She was only 20 years old. Her brother had a friend with ALS from the nursing home. He had been abandoned and was completely incapacitated. Ann took him home and became his caregiver also. One of the twins emailed me "Ann never buys anything for herself. We get by on nothing, but don't want for a thing. " ALSGA enabled the Sullivan's to purchase all of the things that were necessary to improve their quality of life. And there was a lot left over for Annie to finally take care of herself.

 

 

Teresa Kiser and husband will be spending a week at the Eagle Ridge Resort and Spa courtesy of ALSGA. It looks like the perfect place for them to relax and get away from the everyday stresses of dealing with ALS. Their room will be wheelchair and handicapped accessible with a full roll in shower and bath. They both deserve it.

 

 

Joe College (real name) wanted to have a family reunion. He had a recent scare that put him in the hospital and he started thinking about his mortality. The family reunion will be next week in Pennsylvania. Over 50 people will attend. ALSGA will help two of his sons with travel expenses and pay for the catering. We would have reconsidered had we known Joe chose Budweiser as the caterer. Class act Joe! The Budweiser truck will get there on Wednesday... fully loaded.

 

 

Erin Mattingly is 35 and lives in Maryland. She is Totally incapacitated. Her husband has left her with  three young children ages 3-12, and NO money.  It is a horrible situation for her to be in, and even worse for her kids. We don't know how much longer she'll be with us ... but we do know that it is important for her to leave a few good memories behind for her children. That's where ALSGA comes in. Erin would love to take a vacation with her kids to the Maryland Eastern Shore in June.  For an advanced ALS patient, this could cost more than a luxury resort in a 5 star Caribbean Hotel.  ALSGA will make sure she has the funds... and some wonderful memories.

 

 

Steve Moore lives with his wife Kathy in Lockhart, TX. He grew up in Muskateen, Iowa , where his mother and ten siblings still live.   ALS has taken their last dime. I received a grant request from Kathy. I'll share the last paragraph, which really got to me.  "The 29th of May is Steve’s mom' 74th birthday, and as scary as this disease is, it's even scarier when you wake up repeatedly from a dream that you are never going to get a chance to see your mother again. I need to find a way so that Steve can have the peace of mind, knowing that he can see everyone, before he has to say good-bye to all of us. He keeps telling me the end is coming closer and he wants to be able to still have some enjoyment out of what's left. And I know this trip would mean the world to all of us."  ALSGA will make sure Steve has that visit. And we'll hope for a miracle so there will be more visits to come.

 

 

Nancy Astle is 73 and her husband Tom is 78. He is her caregiver. Nancy uses a feeding tube, has 21% breathing capacity, no speech, painful shingles, Bells Palsy, a broken leg and a broken ankle.... in addition to ALS. She was diagnosed only one year ago. Tom does everything for her from showering, using the bathroom, feeding etc. He was sent to the emergency room recently, probably from exhaustion. After 51 years of marriage his devotion knows no bounds. Finally his daughter, Jennifer contacted me.  He just wants to be able to go to the market, pharmacy, hardware store etc...  and know that his wife is safe. ALSGA will make sure he gets more than just that. Tom needs a rest from dealing with this burden. ALSGA take care of it all.

 

 

Jackie Marshall  wished she had a motorized "stair chair".  She lived in the living room. There was a bathroom nearby that was too tiny for her, and had no shower or bath anyway. She could not get up the stairs to bathe. While talking to her husband, I thought it made more sense to expand and modify the downstairs bathroom for Jackie. But the Marshall’s  had been practically wiped out financially. We decided to break down a living room wall, enlarge the bathroom, modify it, and install a bath/shower for her to use.  ALSGA will make it happen.

 

 

         
 
 
 
     
     
     
 
 

Kerry is on a vent and lives in Pueblo, Colorado. She has been in the hospital and was discharged only to find that her husband will not take her back. Her parents live in Mankato, MN and she is going there to live. How do you get a vented incapacitated ALS patient from Pueblo to Mankato? The only answer is by way of an air ambulance which is very expensive. ALSGA is helping her cover the cost. She leaves tomorrow. ALSGA wishes Kerry a safe trip and a better life in Minnesota.

     
     
 
 

Tim Hass is divorced and has two children living with his ex wife in Missouri. Tim lives in Arkansas and has no use of his arms and legs. He now lives with his elderly parents who are his full time caregivers. He misses his kids and dreams wistfully of the vacation they took a few years ago in Gulf Shores, Alabama. He'd love to take them there again, along with his parents and brother. I consider this vacation medical therapy. ALSGA will help make it happen.

     

 

Scott Anderson recently was trached, but his resiliency is incredible. He lives in Massachusetts with wife Cathy and his two young kids. I've known Scott for a while through ALSGA. His functions were declining until he could not get himself in his van. ALSGA helped Scott get a new one with the necessary ramps and lifts to make his life easier. The picture is his family in their old vehicle. Scott's in the front passenger seat and Cathy is the mean looking lady holding the rifle. The other two round out his family. I guess they really did need another van. Hope they enjoy it.

     

 

 

 

A few days ago I received a grant application from Liza Martel who is with The ALS Association Northern New England chapter. It was on behalf of her client, Dennis Hoyniak, who was totally incapacitated, and needed some help with transportation. His wife was no longer able to take him to appointments with their existing vehicle. However, Liza never mentioned anything about it to the Hoyniaks. When I called them to let them know they would be getting a check from ALSGA, his wife, Mary, thought it was a prank call. When I finally convinced her I was for real, I could hear sounds of joy and amazement from her speechless husband in the background. Between them both it sounded that they had hit the jackpot or the winning billion dollar lottery ticket. For the first time in my life, I felt like Ed McMann.

     

 

Adnan Gill had it all. He graduated from one of the best universities, became a successful journalist, married, and had 2 kids. Then, while still in his 30's, he gets blindsided by ALS. Now, the family shares one bedroom with a single bath. The bathroom is so tiny, his wife can barely maneuver him into the shower. The tub is out of service. His mother-in-law lives in a second bedroom and shares the bathroom. One bathroom. Three adults. Two young children. Adnan just wants to expand the shower in order to make it safe, as his wife has to lift and place him in the tiny shower stall. Such a small request from an ALS victim that needs so much. ALSGA will help make sure his request becomes a reality.

     

 

 

In 2002, Beverly Shatteen traveled from NorCal to LA to donate a kidney to her Aunt Thelma who was in kidney failure. At the last minute, the hospital cancelled the surgery for health reasons. Concerned for her Aunt's welfare, she moved in with Thelma to take care of her. Then Thelma was diagnosed with ALS. Beverly became her aunt's caregiver, 24 hours a day everyday WITHOUT A SINGLE BREAK. This wonderfully altruistic lady will finally get that break. ALSGA will pay for someone to stay with Thelma and an airfare for Beverly to finally visit her family. There are other Beverly's and Aunt Thelma's out there. ALSGA would like to help them all.

     

 

 
Last year, ALSGA sent Tony Shelton, from Idaho, a grant so his caregiver and wife Wendy could get some needed medical care. Tony is a proud member of THE UGLY M F MOTORCYCLE CLUB. I'll let you figure out what the M F stands for. Having seen a picture of him, I can verify the ugly part. Tony knows his walking days are over, and his speech is painfully slow and labored. He had to sell his beloved Harley last winter. The UMF is having a big meeting (i.e. party) for all national and international members in Salt Lake City in a few weeks. Tony wants to go so he can "fly his colors" and party with old buddies. He just didn't know where the money would come from to get him there and pay for lodging and meals. I use the word meals lightly, as most of his nourishment will probably come from a Budweiser can. Apparently, ALS is not stopping Tony from raising hell. ALSGA just added a "RAISING HELL GRANT" and Tony surely qualifies.
     

 

 

 

 

 

This is a picture of the Camacho family (Danielle, Alfred, Britanny, and Jessica) in happier days. ALS had not yet taken a huge toll, and Danielle's adolescent daughters were still able to be children. The disease progressed and a few years ago it all fell apart.

Husband/father Alfred is a fireman and spends 5 days/nights per week away fom home. Danielle's dad, Al, was heroic and spent 5 days a week taking care of Danielle who has no function at all. In succession he had knee surgery and then brain surgery to remove a tumor. The burden fell upon the girls when they were just 16 and 13. Britanny is now a junior and WAS a serious and excellent student. Since they could not afford home care more than twice weekly, someone had to fill in. I just found out that Brittany is missing 2-3 days of school EVERY week taking care of mom.

Mom refuses to be vented or use a feeding tube. She has decided to let ALS take it's natural course. That's her decision, but her care-taker daughters are forced to have a front row seat. I was astonished when I found out Brittany wasn't going to school. I've been at their house too often to remember in order to get things under control. ALSGA will hire a caretaker so Brittany never has to miss another day of school. We'll figure things out from there.

 

   

 

Judy Emrich lives in a rural area with her husband Joe who is on a vent. There are frequent power outages there. They need a standy generator that will automatically kick in if the elctricity goes out. If it happens in the evening when everyone is sleeping, Joe would die. ALSGA helped them get the generator. The money from YOUR December donations covered the cost. On behalf of the Emrich's, ALSGA says THANKS!

 

     

 

 
Beverly Merk, 62, is battling breast cancer. She is also the sole caregiver for her husband with ALS. She is very frail and did not have the strength to lift or move her husband even with a Hoyer lift. She found an effective alternative but it was VERY expensive. When she emailed me the quote, my eyes popped out. I called the provider to see if we could work something out. Within minutes, they called us back WITH AN OFFER WE COULD NOT REFUSE. This wonderful company worked it out so ALSGA could get the Merk's what they need. The company is: INNOVATIVE BUILDERS IN MIDDLEBURG HEIGHTS, OHIO. ALSGA cannot thank them enough for helping the Merk's deal with the cards they were deal
     

 

 

 

 

Sometimes I get a request that strikes a nerve. This one is from Don from Punxsutawney, Pa. It's edited for brevity: "My soon to be ex wife constantly runs with the kids leaving me at home alone or with a caregiver. I'm tired of missing out on their lives. I have missed out on countless trips, events, and vacations with my 2 sons and her family because they don't want to be bothered. I would love to take a trip with my family out west to see Yellowstone. I have begged my wife to look at wheelchair vans with me, but she had no interest." ALSGA couldn't afford the kind of van that could take Don's family safely to Yellowstone, but we could afford to make the first 9 payments on one that could.... which got him over the hump. Wondering if he saw alot of Bison... and old faithful.
   

 

 

 

 

Kathy Sauviac is the widowed mother of four and works FULL TIME. She relies on her automated, computerized van to get to work and general survival. She's survived things that would have flattened an able-bodied person. Kathy is confined to a wheelchair and needs a ventilator to breathe. She is fed thru a tube. Kathy's van has broken down and she needs a new one. There is no bus service where she lives with her youngest child. Kathy recently suffered yet another horrible blow: Her son was diagnosed with acute renal failure. Now not only must she drive her van to work in Orlando, but she has to take David to dialysis three times a week. Without a specialized van, they are in a hopeless situation. ALSGA has helped make sure she gets that van. Skye her service dog is another hero making sure Kathy has someone watching her back at all times.

     

 

 

"Jane Doe" lost her husband and recently the last of her two children to ALS. Her sister Kathy was afraid she was going to hurt herself or worse due to a paralyzing depression. ALSGA immediatley flew Kathy out to stay with her to make sure she got help. "Jane" was destitute so we paid for her psychiatric treatment and medication. We later flew her to Atlanta to stay with her sister until everything is ok. She's still on medication, but just emailed me that "she sees the light from the end of the tunnel"

     

 

 

 

On Nov 16 I received this email from Tony Shelton from Idaho. "I don't know where to begin. My wife Wendy needs a mammogram and physical, but we don't have insurance for her because of my ALS. We also need a wheelchair lift for the van, but most of all I would like to have my wife medically taken care of." ALSGA made sure that Wendy received the medical care she needed. Tony was referred to ALSGA By the MDA. MDA had net assets of $211 million in 2007. $147 million was in cash or cash equivalents. It paid about $47 million in compensation for the first NINE months of 2007. Its CEO receives over $400 thousand in salary. And they are referring patients to ALSGA?! ALSGA is run and 99% financed by a single unpaid person.

     
     
 
The Bowers were a hard working middle class family. Until ALS. They are now out of money. Out of luck. And out of help. They've tried everything. SSDI denied. VA denied. Medicaid denied. Food stamps denied. MDA? No help. Senators office? Calls not returned. Ann Bowers asked for a single Christmas present for her 13 year old son. One present for 3 kids? No way! ALSGA will make sure the whole family has a great Christmas. With some extra $ left over. But then what?
     
     

 

 

Rose Silveira's last wish was to spend Thanksgiving with her family and grandchildren at Disneyland. I said ALSGA would make it happen. Well, look at the happy picture below. Rose's Thanksgiving week with her family".

 

   

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"I visited Beth yesterday. She has no speech (uses a Dynavox) and is losing use of her arms and legs. She lives with her husband Paul (who suffers from Parkinsons and dementia) in a house they purchased in 1973. She has finally realized that living there is no longer an option. Her wish is to sell the house and move into a facility with her husband. She cannot handle this on her own and has no one willing to really look out for her best interests. ALSGA will. We will arrange for the sale of her house. We will also visit facilities that 1. Will provide good care. 2. Can offer adjoining rooms with Paul. 3. Can provide for the needs of an ALS patient. Once I've inspected these facilities, I'll take Beth to see the best ones so she can make her choice. Shouldn't ALSA and the other cash laden ALS organizations be providing this type of service?"

     

 

 

 

I receive so many requests that begin like this; "Before my (wife, husband, mother, father, son, daughter etc) leaves this earth she would like to (fill in with a wish)". John Rheault's wife wished to see her children one last time. ALSGA flew them all in covered their expenses including airfare, hotel, rental car, etc... It was an emotional reunion. People think wishes are only for children. Adults with ALS also have last wishes. Someone needs to fill them. If not us, then who?

     

 

 

 

What happens when the caregiver needs care? Janel Rivera is her mom's fulltime caregiver 24/7. She has been needing surgery for six months, but kept putting it off because there would be no one to care for mom. Finally the pain became unbearable so she contacted ALSGA. We gave her a grant to bring a caregiver inhouse while she is recovering from surgery. I've seen caregivers breakdown in situations like this. No money. No one to help. Janel can recover without stress, knowing that mom is being well cared for.

     

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I received a call in early October from Julia Rozario. She has 3 kids, and the family's financial resources were exhausted. Her husband (Pat) was not expected to make it to December 25. His last hope was to have a last Christmas with his family. Well, who says Christmas has to be in December? I told one of my elves on Long Island to make Christmas happen early. My elf decorated their house, set up the tree, and made sure there were plenty of presents for everyone. To top it off, we flew his parents in the next morning. I just found out Pat passed away last weekend. His wife called and said it was the family's best Christmas ever.

     

 

Allie Turner is fully incapacitated. She lives in a trailer in Florida with her husband and beloved dog. ALS has taken their last dime. When she requested a grant to modify her bathroom so she could use it, ALSGA made sure they had the funds. We used to email each other frequently. Despite ALS and her miserable living conditions, she has wanted to live as long as possible and was always upbeat. ALSGA was planning on putting in a new ramp for her, but all attempts to reach her have failed. She is on facebook and visits my page. Allie, if you read this, please let me know that you are ok.

     

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Jim Metz, 36, was diagnosed with dementia two years ago and ALS. His wife, Rachelle, has been working full time supporting her family. With two children (2,5) and a husband with ALS, work is no longer an option. She is behind on all her utilities. The following is the last paragraph of a long heartbreaking letter:
"I know your post said to send a list - but I am so lost not even sure what to ask for! I hope to get our bills caught up after the first disability check comes next week. However, the next will come after Christmas. Our girls have a list a mile long for Santa as I try to explain Santa cannot bring much this year. We are also looking to make as many memories as possible before any more of my husband's capabilites diminish". ALSGA will make sure she has a great XMAS.

 
 
 
 

 

Scot Anderson lives in Middleboro, Mass. with his two young sons. They are all sports nuts and their favorite team is the Red Sox. ALSGA got the family the best tickets available on two separate days so they could go watch the Sox play the hated Yankees. We also sent him with plenty of cash so the kids could get sick on as many hot dogs as they could stuff down their throats. Oh yah, there was plenty of $$ left over for candy, ice cream, and other unhealthy junk. Next will be tickets to see the Celtics. They don't know this yet.

 
         
 

 

 

 

Maureen Garrity lives in Helena Montana. Her ALS was progressing and due to her living situation she would soon need help with the tasks of daily living. The answer was a service dog. There was a wonderful place in Pennsylvania that trained such dogs for use by ALS patients. An ALSGA grant helped make it happen. These dogs will even make the bed and do housework. Don't believe it? Look at the attached photo.

 
 

 

     
         
 
 
We previously told the story of Bill Mehan, who lost his family's life savings and eye sight to a scam artist in Nevada. We filed a lawsuit and today got a default judgement. We also filed a criminal complaint and will be meeting with the Nevada DA in the very near future. We have other such lawsuits protecting ALS patients in similar circumstances. These legal actions are very expensive. Are there any civil or criminal attorneys willing to advise us as we move forward with these cases? Please help us.
 
     
     
 

 

 

 

Sometimes the needs of a patient are so obvious and simple to everyone but Medicare.... or Medi-no-care. Megan Michork is a beautiful 25 year old. She has lost her dad and all of her brothers to ALS. Now she has it. Megan is an amazing person, and I'll post her story later. Right now, all she wants is a lift to help her take a shower. Apparently Medi-no-care feels that ALS patients don't need to shower, bath, or otherwise keep their bodies clean. Her request for a lift was denied. ALSGA is going to help her get that lift. We shouldn't have to do this. Where are all of the huge organizations that are supposed to be helping these patients? Such as The ALS Assoctiation, MDA, etc. They seem prolific at raising money. Where does it go?

 
 

 

 
 
 

 

 

 
Imagine being alone in the world with ALS, thinking no one cares. Martha Swenson was in her sixties. She had no family near and few friends. She was alone with her dog who was her only companion. She still lived at home, was totally paralyzed, on a respirator and feeding tube with 24 hour nursing care. Finally, she was placed in a nursing home and I lost all computer contact. I went out to check up on her and found her lying in a bed with nothing. They didn't even hook up her computer, her only means of communication. When I looked at her, tears were falling. She was grunting and trying to tell me something urgently. I decided to go to her house and get a few of her possessions to cheer her up. Remember, her little dog had been her life. She loved that dog. When I walked in the poor dog was lying by the door dead. When they moved Martha out, no one realized there was a little dog left behind. She died of thirst and hunger. Martha was trying to tell me please, someone save my dog! Martha died a few weeks later.
 
         
         
 
 
Sharon Carruthers ALSGA's first volunteer. She also has ALS. Before Sharon, I was running this foundation like Daffy Duck on speed. Sharon put an end to that in no time. She has accomplished things for us that haven't been done since. Somehow, she got a dealer in Texas to donate a van that we modified and shipped to a grant recipient. While I've yet to get a van donation since, she made me realize that inexpensive vans were available for our patients. Unfortunately, her ALS was progressing rapidly. Every week she struggled a little more. Finally, she was too weak to continue helping me. A year later she needed a grant for an elevator lift in her house. ALSGA was only too glad to finally pay her back for all her help. I still remember our long talks about God, religion, and the afterlife. Well, maybe they were more like arguments. We agreed that she was going right to heaven, but I was a long shot.! The last time I saw Sharon was August 2009. Her voice was very weak, her breathing shallow, and her limbs were of very little use. I know she has a very strong faith and no fear of what lies ahead.
 
         
         
 

 

 
This is Rose Reynolds, her son Bill Behan and grand daughter in better days. Rose contacted ALSGA to see if we could help her son in Nevada with some home nursing care. I was glad to help. Bill, at that time was totally paralyzed with a feeding tube and respirator. I stayed in contact and then Rose told me her horror story. Rose had lost her husband and other family members to ALS. She was now desperate to help Bill. She somehow was referred to a "Doctor" Fresson who "knew someone that could cure ALS". This person was a sociopath named Michael Morgan and his company, Solar Sonic Enterprises. Unbeknownst to Rose, "Doctor" Fresson was a partner. In order to cure Bill, Rose had to cash in her life savings and borrow money from her elderly father. She was then to fly to Nevada to deliver $50,000.00 in HARD CASH before the treatments could start. Bottom line is, Rose lost her life savings and Bill's family was emotionally devastated. Additionally, the treatments hurt Bill further, burned his legs, and caused head injuries. Bill could not cry out since he could only blink his eyes. I flew to Nevada and retained an attorney. ALSGA is suing all liable parties on behalf of Rose, Bill, and his family. More importantly we are pursuing criminal charges. I plan on putting EVERYONE involved in prison for a long time. Their days of scamming the desperate mothers of blind and paralyzed ALS patients will hopefully be over.
 
 

 

 

     
 
 
One day I received an email regarding a post on an ALS forum. A man with ALS was talking about suicide. Could ALSGA look into it. Mr. "X" was an elderly gentleman living with his frail wife. As his ALS progressed, his wife was having a difficult time lifting him, frequently injuring herself. He was despondant at the thought of being such a burden. ALSGA contacted his wife and arranged to have lifts installed making it easier for her to get him out of bed etc. We then arranged for counseling at an ALS center. They were doing better the last time I heard from them. It's been a long time and I hope as his ALS progresses, they are able to cope.
 
 

 

 

     
 
 
Steve and Jenny Massa were married in Ohio November 2004. A month later Steve noticed the signs of what would ultimately be diagnosed as ALS. Steve had to leave his job as a paramedic, and Jenny was forced to cut her hours as a nurse back to three days per week, As Steve's ALS progressed, they realized how much fun they would be mising out on with their two teenage daughters. They longed for a family vacation, but the financial burden of ALS made it impossible. This is a picture of Steve and Jenny on their family vacation at the Virginia shore. ALSGA was thrilled to help make it happen.
 
 

 

 

     
 

 

 
Ann Sullivan won't send me a picture, so Mother Teresa is the closest person I can think of. She is 25 and from Montana. She called me asking how she could help. This is her story. Ann has twin brothers, 29 years old, with ALS. She also has two younger brothers, now 7 and 12. Her dad died 5 years ago from ALS and her mom soon after. The family was scattered to various relatives and nursing homes. She wanted them all together and rented an inexpensive house. She became the full time caregiver to incapacitated twins and 2 young children. She was only 20 years old. Her brother had a friend with ALS from the nursing home. He had been abandoned and was completely incapacitated. Ann took him home and became his caregiver also. One of the twins emailed me "Ann never buys anything for herself. We get by on nothing, but don't want for a thing. " ALSGA enabled the Sullivan's to purchase some of the things that were necessary to improve their quality of life, including the laptops that connect them to the outside world. She promised to bake me a huckleberry pie. I'm still waiting. She's just too darn lazy.
 
 

 

 

     
 
 
Danielle Camacho was our second grant recipient. She is in her 30's with two adolescent daughters. She is now totally paralyzed and without speech. We became close friends. In January 2009 she fell behind on her mortgage payments. My attempts to renegotiate with JP Morgan fell on deaf ears. In June, without notice, the house was sold at auction and they were told to vacate. They could have cared less about her ALS. Then an amazing thing happened. I alerted my ALS friends that we needed their help. They bombarded the Chaiman, CEO, media and everyone else with angry emails and phone calls. We actually shut their system down. ABC news called them to hear what they had to say. Five minutes later they were apologizing, rescinded the sale, and agreed to renegotiate the mortgage. THANK YOU TO MY ALS FRIENDS FOR COMING TO THE RESCUE!
 
 

 

 

     
 
 
Dennis Myrick has the genetic form of ALS. He lost his mother and too many other family members and relatives to this disease. His ALS is progressing rapidly, meaning that he measures his life in months, not years. He needed a wheelchair van in order to escape his prison of four walls. We found one that was advertised as "needs nothing to drive anywhere... turn key... ready to go". It turns out that it didn't even start and was a worthless piece of #!@! The Myricks were devastated. The seller is named Sean Ludwig. When I'm thru with him, he'll never even think of victimizing a helpless person again. Meanwhile, we are looking for another van for the Myricks.
 
 

 

     
 
 
Scott Pfeiffer lives in Wisconsin with his wife and two young children. His ALS seems to be progressing rapidly. His mom, dad, older son, brothers, sisters, and relatives are in California. Scott's mom called me to see if we c ould help get Scott and his family to a family reunion while he can still travel. Becky, Scott's mom, is now paying us back a thousand times over. She is putting on our first fundraiser Oct 25th, 2009. I hope Becky plays a big role in our future.
 
 

 

 

     
 
 
Tim has had ALS for about 3 years. He is totally paralyzed and needs to be on a respirator to breath. Until recently, Tim's life was four walls in his house. ALS Guardian Angels found a handicapped van for him. Hopefully, he can now get out and see a bit of the world.
 

 

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