The Constance Joan Schneider Conte ALS Group has expanded our mission to include support for parents of a child with autism. As with Connie's ALS and other neurological disorders, Autism can leave the caregiver emotionally and physically exhausted and without hope. For more information see our page on Childhood Autism which outlines our needs and how we can help others or contact Mark Conte at Mark.Conte@alsgroup.org for more information on our services.

The Constance Joan Schneider Conte ALS Group, Inc.

This foundation was formed in memory of my wife Connie in 2005 after she died of Amyotrophic Lateral Sclerosis (ALS). Her suffering and anxiety began in September 2002. The disease began to destroy her quality of life, first by diminishing her ability to speak. Speech therapy was introduced but to no avail. To compensate for this she used a TTY machine that permitted her to type a message and an operator would read what she typed to the person she was calling or receiving a call from. Even this ability quickly went away as her brain told the neurons and the muscles in her body to shut down. Accompanying this change was a diminished ability to swallow. These changes while seemingly small, stifled her ability to pick-up a tiny plastic cup to take a sip of water. She lost the ability to swallow anything but liquid food such as consommé, and finely pureed foods. In only a short period of time her ability to swallow, completely diminished. She felt embarrassed because she was drooling constantly and could not even swallow her spit. Tears flowing down her sallow face forced me to want to hide. My tears flowed and mixed with hers as I held her and softly kissed her face in an effort to draw away her pain.

After many hours of therapy to improve her swallowing, she was forced to have a tube placed in her stomach in order for me to give her the sustenance that she needed to keep her alive. I tried to give her protein powder the type used by weight lifters to bulk up their bodies. She motioned for me to show her the package, so she could look at the calories. Immediately she argued vehemently with indiscernible utterances, that she did not want to put on weight. She had always tried so hard to keep her weight in check and now ALS had made all of her dieting a waste. Ultimately, I was forced to give her only cans of liquid food, Ensure. I contacted every doctor in the country that dealt with ALS patients and continued to hear from them that there was no cure. I even took Connie to Beijing, China where a doctor claimed cures using the Olfactory cells from discarded unborn infants noses and injected them into the brain of an ALS patient. In my estimation, he was a charlatan. It has been said that people that are dying of a disease will drink battery acid if they thought it would be a cure. Connie was dubious about the trip and treatment and she was right.

When we returned her condition worsened, the pain was unbearable, she could not sleep, she cried a lot and part of this was attributed to the disease. She was unable to sleep in our king-size bed, so I had a hospital bed placed at the foot of my bed and she laid perpendicular to me so I could watch over her at night. Most of the time she was unable to sleep, wanted to get up and go into the family room to sit in a motorized wall chair that I bought for her. When I could get her into the chair, I slept in a chair next to her. This situation did not last long. I reached a point where I could no longer pick her up to make the move from the bed to the chair and back. Each night she cried from discomfort throughout the night. I mentioned in my book, that details her trials with ALS, I lost my patience on many occasions. Thinking of this even after almost four years after her death, tears me apart. She was a wonderful Mother and Wife and as most of us that were left behind say, "She did not deserve to die this way." The pain got worse and thanks to Hospice she was able to gain short periods of relief with Morphine injections. Three days before she died she went to the Hospital in Hagerstown, Md. I believe she overdosed on Morphine. On the morning when she died, I held her hand, rubbed her face softly and as her pulse vacillated between 30 and 20, I told her to let go, hoping she could hear me. I told her that she was going to a better place and I kissed her goodbye. The wrinkles of pain and the tears on her face had disappeared, and looking at her, I knew she was in God's hands, and at last she was at peace.

This foundation needs your support to pay for ALS research, so people like Connie do not have to die such horrible deaths. I wrote my first book on Connie’s bout with ALS and three other books on various subjects in an effort to raise funds to keep Connie’s foundation viable. I asked my relatives and friends to support us financially, which many have done. I have also asked them to tell their friends about the books that are used to support the foundation and can be used as a tax deduction. In the past we have done a number of things to help people. Our new objective however, has changed. We are going to provide most of the contributions or book sales about 85%, to fund ALS research. We will keep 15% to continue to help caregivers who desperately need relief from their caregiving duties. Our ALS foundation will work with your community to help you identify and to pay for a person to relieve a caregiver for one to two hours a week from their arduous task, and attempt to locate a doctor who may consider a home visit.

Our foundation is small and the number of people with ALS is not huge like the number of people with Cancer or Aids. I am attempting to collaborate with another ALS foundation that is connected with the Hospital mentioned under headline news. They appear to be getting promising results from their ALS research. Our collaboration with this other foundation would permit us to assist in financing research for a cure for ALS. Each year over 100,000 people contract ALS. When they find out that they have this devastating disease, the decision is accompanied by an automatic death sentence. Although an ALS patient experiences excruciating pain, and extreme suffering, their mental faculties remain in tact. This happens because their brain is not affected by the disease, they experience severe anxiety that gets worse everyday of their life, and then they die a horrible death. Did you realize that over 150,000 of those women and men that were in our armed forces currently are ALS patients? While ALS patients may survive for five or more years, the majority die within three to five years.

We realize that many of you donate to cancer foundations and other foundations that are widely advertised. We will not spend your contributions advertising or on salaries. Expenses to publish the books we sell are paid for with the funds from the Board members personal bank accounts.

The time has come for Connie’s foundation to cry out for contributions. Most of you have lists of email friends that you exchange religious and comical emails with ten times daily. You can help Connie’s foundation to support research for ALS by telling them about this site and telling them about the books we sell to raise research money. I know times are difficult, and that finances have been diminished by the downslide of the economy, but the large foundations have millions in their coffers. Shave a few dollars from your donations to them and help a cause that have only a few donors and is much less known by the public. Keep in mind that ALS is not confined to anyone group of people, young or old. Help is needed now and your donation may result in your love one’s never knowing, that this disease ever existed.

HEADLINE NEWS: Our foundation will try to provide in this section, the latest information available regarding Veterans information, and Research studies that will include clinical trials currently in progress. The information will change as it is updated or becomes redundant.

1. For Veterans, if you have served on active duty for at least 90 consecutive days, no matter where, and have ALS you are eligible for benefits. Most veteran's organizations (VFW, American Legion, Paralyzed Veterans of America, etc.) have personnel available to assist the Veterans families to claim benefits. Estimates show that almost 150,000 Veterans have ALS. Statistics seem to show that military personnel are twice as likely to be diagnosed with ALS (VFW Magazine September 2008).

2. A recent break though by a consortium of leading ALS researchers from the U.S. and London identified a new gene ALS6 (Fused in Sarcoma- FUS). FUS can be identified in about 5% of the inherited cases of ALS. An excellent article on this break through can be found in the Spring 2009 issue of the ALS Associations, "Connection."

3. The initial two year clinical test study results of the stem cell procedure instituted by Hospital San Jose Tecnologico de Monterrey, was published in Cytotherapy, February, 2009. Positive results were confirmed through both clinical observation and MRI tractography. It is considered by many within the international neurological community to be the foremost procedure available for minimizing or abrogating ALS symptoms and extending the lifespan of ALS patients. The procedure is a state of the art use of autologous CD-133 (+) stem cells injected into the frontal cortices for the effective replacement of motor neurons.

Initially two U.S. ALS research subjects traveled to the Hospital in Monterrey, Mexico in early June. They both left for home in early June with recommended physical therapy guidelines that are predicted to encourage neurons to develop. They will return in six months for follow-up procedures. The procedures will include a cranial MRI tractography. In July and August, several new patients are scheduled to become ALS research subjects (Worldwide ALS 2009)

4. The Food and Drug Administration is sharing with the public its decision to allow patients with Amyotrophic Lateral Sclerosis, a fatal neurodegenerative disease also known as Lou Gehrig’s Disease, or ALS, to have access to a drug called Iplex under an Investigational New Drug (IND) application (March 6, 2009). Iplex (mecasermin rinfabate [rDNA origin] injection), is a combination of two substances: human insulin-like growth factor 1 (IGF-1) and human insulin-like growth factor-binding protein-3 (rhIGFBP-3). Iplex is approved by the FDA only for the treatment of growth failure in children with severe primary IGF-1 deficiency (Primary IGFD) or with growth hormone (GH) gene deletion that have developed neutralizing antibodies to GH. The drug is currently not marketed because of a court order related to patent infringement. Iplex is made by Insmed, a biologics company headquartered in Richmond, Virginia. The complete decision by the FDA can be found at there website www.hhs.gov.

If you would like to support our cause, we would gladly accept you tax deductible donation,or sell you a book. If you have any questions give us a call,or send us an email.

44469 Maltese Falcon Square
Ashburn, VA 20147
info@alsgroup.org

Under IRS Code 501 (c)(3) a nonprofit corporation Federal Tax ID Number 20-3877379
Note: Contributions to all 501(c)(3) organizations are deductible as charitable donations including book sales, for federal income tax purposes.

For more information on the topic or giving, go to http://www.give.org/

The founder Joe Conte provides the details of what ALS is all about in the hopes to help others.......

"Down the Yellow Brick Road" An ALS Victim’s Quest for Oz
by Joseph Conte & Constance J. Schneider Conte
"Connie and Joe, her husband and caregiver, travel down the road together for fifty years. Through their fifty years of marriage the road twists and turns through periods of births, trauma, love and happiness. The final stretch in the road ends in sadness as Connie survives cancer and then contracts ALS, Lou Gehrig’s disease. In an effort to obtain a cure for her ALS, she and Joe travel Down the Yellow Brick Road to China, to meet this Wizard of Oz."

$12.99 + SH $3,25

"Flies In My Spaghetti Chocolates Over the Wall"
by Joseph J. Conte
"Ever feel like you are juggling balls, and that at any moment you’ll lose them all? Follow JJ Conte’s life in Flies in my Spaghetti, Chocolates over the Wall as he recalls the difficulties of life—flies in his spaghetti—that could have made him drop the ball, and the moments of happiness—chocolates over the wall—that kept him balanced. Be provoked, through simple memories, into a mental search of your own past, a search that will reveal your own balancing act of life. Flies in my Spaghetti, Chocolates over the Wall is a reminder that through all things, you must persevere—you never know what blessing is around the corner!"

$18.99 + $3.25

Love is a many splendored thing as we are reminded in a wonderful old film with William Holden and Jennifer Jones. Many ordinary people in the course of their lives find themselves in an extraordinary romantic situation. It may be on the loading dock, in an office, at a party, or just by a chance meeting. Who can really say how a romance happens? Most discard these romances after they realize that continuing down that path might ruin their marriage or break up their lover’s marriage or for a number of other reasons. This story is about an Italian named Mario. Mario is one of those people who are not looking for romance but fall into the love trap; in this case a one-way love that he runs away from because of its trauma to him. The reader gets to travel with Mario to some exciting tourist places with exotic foods as he encounters other women and tries to shake off his love for Patricia, a married woman.
$14.25 + SH $3.25

We are currently fighting a War in Iraq. The Middle East is in turmoil. Tribal names such as the Sunni, Kurds, and Shiites, are bandied about by the media. Most people outside of the Middle East, do not have a clue as to how this puzzle in the sands and mountains fits together. JJ Conte’s book will let the reader take a snapshot of ten centuries of religious wars in the Middle East, beginning with the nine Holy Crusades, and concluding with the current wars in Iraq, Afghanistan, and Pakistan. The first eight chapters are historical and all ten centuries culminate in a surprise ending in Chapter 9
$12.90 + SH 3.25

Why explore this site

We will provide you with information on ALS research treatments. In the area of recent research this site(s) may be of interest:

A leader in world wide research www.wfneurology.org

Variety of topics and links www.wfneurology.org/link_neuromuscular.htm

Clinical Trials www.wfnals.org

VA gave service-connected status to Persian Gulf War veterans with ALS in 2001. The decision was based on a Pentagon and VA study that showed they were twice as likely to contract the disease as troops who did not deploy to that war zone.

A later study showed that all veterans were 60% more likely than the general public to contract ALS. A VA-funded ALS registry from 2002-2007 identified more than 2, 100 vets with ALS, many of whom have since died. A five-year study at Duke University (August 2008) Washington Wire) set to conclude this year is interviewing members on the registry who are still alive.

Overall, some 30,000 Americans suffer from ALS. The disease kills motor neurons in the brain until paralysis sets in. Most patients die within five years of diagnosis.

Since the VA approved the change, vets with ALS are presumed to have contracted the disease while in service much like Vietnam War vets who suffer from certain conditions that are now associated to have been caused by Agent Orange exposure in Southeast Asia.

THIS FOUNDATION WILL SEND ABOUT AN ALS CAREGIVERS BOOK: "DOWN THE YELLOW BRICK ROAD,” TO THE FAMILY THAT HAS THE ILLNESS AND WE WILL SEND THEM A COPY OF THE BOOK FOR FREE.

More Information

If you would like to support our cause, we would gladly accept you tax deductible donation, if you have any questions send us an email.

Constance Joan Schneider Conte ALS Group Inc. Under IRS Code 501 (c)(3) a nonprofit corporation

44469 Maltese Falcon Square

Ashburn, VA 20147

Info@alsgroup.org

Under IRS Code 501 (c)(3) a nonprofit corporation Federal Tax ID Number 20-3877379

Contributions to all 501(c)(3) organizations are deductible as charitable donations for federal income tax purposes.

For more information on the topic or giving, go to http://www.give.org/