Research Roundup

by Margaret Wahl

New studies strongly support ALS-angiogenin connection

A study conducted by investigators at several institutions in Boston has added additional support to an existing hypothesis based on earlier studies that mutations in the gene for angiogenin can cause ALS, or at least increase susceptibility to the disease. Angiogenin is a protein that participates in the formation of new blood vessels (angiogenesis).

David Wu at Brigham and Women’s Hospital, with colleagues at Harvard Medical School and Massachusestts General Hospital, identified mutations in the angiogenin gene in four out of 298 North American ALS patients whose DNA had previously been screened and found not to contain ALS-causing abnormalities in a gene called SOD1.

Last year, Matthew Greenway and Orla Hardiman at the Royal College of Surgeons in Dublin, Ireland, led a team that studied 1,629 people with ALS and 1,265 without ALS, identifying angiogenin mutations in 15 people in the ALS-affected group and in only one person in the unaffected group. (See “Angiogenin Mutations,” April 2006.)

Wu and colleagues, reporting online Sept. 20 in Annals of Neurology, say the four variants they identified in the four individuals all cause a complete loss of function of the angiogenin protein.

A deficiency of the protein known as vascular (blood-vessel) endothelial growth factor (VEGF) also has been implicated as a possible ALS susceptibility factor, and angiogenin works in the same biological pathway as VEGF.

The researchers speculated that the role of angiogenin in protecting neurons might extend beyond its effect on blood vessels that support these cells.

On Oct. 4, Vasanta Subramanian and colleagues at the University of Bath, United Kingdom, announced online in Human Molecular Genetics their findings that angiogenin is involved in maintenance of motor neurons and in the growth of nerve fibers, and that three ALS-associated angiogenin variants were toxic to lab-grown motor neurons.

Progranulin deficiency leads to toxic TDP-43 behavior

When progranulin is deficient, TDP-43 breaks up and leaves the cell nucleus.

Last spring, Ian Mackenzie at the University of British Columbia and colleagues announced they had identified a key difference between ALS caused by a mutated SOD1 gene (a “familial” or inherited form) and other forms of ALS.

They found that motor neurons (nerve cells that control muscle action) from people with nonfamilial ALS, ALS with dementia (cognitive impairment), and non-SOD1 familial ALS all had clusters containing a protein called TDP-43. In contrast, samples from people with SOD1-related familial ALS didn’t show this protein in their nerve cells.

Now, Yong-Zie Zhang at the Mayo Clinic College of Medicine, with colleagues in the United States, United Kingdom and Italy, have taken those observations a step further by finding that a deficiency of the protein known as progranulin is one cause of mislocation and clustering of TDP-43.

The researchers, who announced their findings in the Sept. 26 issue of the Journal of Neuroscience, found that when the progranulin protein is deficient because of a mutation in the progranulin gene, the TDP-43 protein molecule behaves abnormally. It splits into two pieces and appears in the main part of the cell (cytoplasm) instead of in its normal location in the cell nucleus; and it forms disease-related clusters.

The investigators write that the new data provide insight into the mechanisms linking the chromosome-17 gene for progranulin with disease-related TDP-43 abnormalities, at least in some cases of ALS. They say their work will set the stage for screening of compounds that can prevent TDP-43 fragmentation and redistribution.

Knopp Neurosciences to pursue development of ‘mirror-image’ molecule

S(-) pramipexole (left) mimics the actions of dopamine and is used to treat Parkinson disease. Its mirror image, R(+) pramipexole (right), doesn’t imitate dopamine but has antioxidant and anti-cell-death properties that may be beneficial in ALS.

Knopp Neurosciences, a Pittsburgh drug discovery and development company, has announced it will develop an orally administered small molecule for the treatment of ALS that it calls KNS-760704.

The molecule is a mirror image of pramipexole (Mirapex), which is approved for the treatment of Parkinson disease and restless legs syndrome. Mirapex is referred to as S(-) pramipexole, and KNS-760704 is known as R(+) pramipexole.

Pramipexole mimics the actions of dopamine, a carrier of signals in the brain. It also acts as an antioxidant, reducing a cell-damaging process known as oxidative stress, and combats a process called programmed cell death, or apoptosis. Mimicking dopamine is not considered desirable in ALS, and the mirror image form of the drug doesn’t do that. It does, however, have antioxidant and anti-apoptosis properties.

In 2005-2006, investigators at the University of Virginia in Charlottesville conducted studies of the mirror image form in people with early-stage ALS, using a variety of dosage levels. Results of those trials are expected soon.

“Knopp and I are pursuing parallel but separate courses,” says James Bennett, the University of Virginia professor of neurology and of research in psychiatric medicine who was the first to observe the differences between the two forms of the pramipexole molecule.

Bennett says Knopp Neurosciences licensed the development of the mirror image form of pramipexole from the University of Virginia Patent Foundation and is developing it commercially, while he and others at his university have concentrated on small studies to determine the biological effects of the drug.

For information about the University of Virginia studies, see the clinical trials section of the MDA site at www.mda.org; or contact Dr. Ted Burns at (434) 924-5361 or tmb8r@virginia.edu.

“Knopp will be able to raise funding for the expensive efficacy studies that ultimately will have to be done,” Bennett says, but he also notes that his small trials “enabled Knopp to move much faster into human studies, which will hopefully get this drug to the ALS community more rapidly. That’s everyone’s goal.”

Researchers probe use of MRIs in diagnosing ALS-related cognitive decline

Magnetic resonance images (MRIs) may one day be useful for monitoring the dementia that occurs in a small proportion of people with ALS, say researchers in Japan.

Eiji Matsusue at Tottori University in Yonago, Japan, and colleagues, studied three people with ALS and dementia, comparing their MRI findings with microscopic analyses of their brain tissue after death.

In all three cases, they found MRI abnormalities in the form of a more-intense-than-normal signal on the images correlated well with loss of nerve fibers and an excess of support cells (glia) found when the brain was examined microscopically.

The researchers, who published their findings in the September issue of the American Journal of Neuroradiology, say MRIs showed changes in signal intensity that appear to reflect microscopic changes in brain tissue in ALS-related dementia.

They say further studies, comparing large numbers of people with and without ALS-related dementia and following them through time, are needed to clarify the diagnostic value of MRIs in this condition.

Ceftriaxone trial still open

A multicenter trial of ceftriaxone remains open to ALS patients who are at least 18 and have a forced vital capacity of at least 60 percent of normal.

Ceftriaxone is an antibiotic used to treat certain types of infections. It has shown evidence in laboratory experiments that it can increase the transport of a potentially toxic chemical called glutamate away from spaces between nerve cells. It has to be given intravenously.

The first two stages of the study will last at least 20 weeks, and there will be a third stage if the results from the first two warrant it.

Contact Amy Swartz or Fran Murphy at Massachusetts General Hospital at (617) 643-3980; or send e-mail to alswartz@partners.org or fmurphy@partners.org.

Jerry Lewis Urges Congress to Protect Medicare MDA National Chairman Jerry Lewis has sent letters to Congress urging passage of legislation protecting the Medicare benefits of those who rely on complex medical equipment and technology, such as high-tech power wheelchairs. H.R. 2231, the Medicare Access to Complex Rehabilitation and Assistive Technology Act of 2007, would exempt “all complex rehabilitation products and assistive technologies” from Medicare’s competitive bidding policy, allowing those with severe physical disabilities access to the highly customized mobility equipment they need. Current Medicare competitive bidding policy limits those who need such equipment to one or two pre-selected equipment vendors, “promoting a one-size-fits-all concept of care,” Lewis said in his letter to Congress. “How can you tell people they only can choose from a few types of wheelchairs?” asks Lewis. “This is not only medically wrong, but fiscally irresponsible.”

by Margaret Wahl

As books about ALS go, Augie’s Quest: One Man’s Journey From Success to Significance is a little different from most. Written by Augie Nieto, co-chairman of MDA’s ALS Division, and writer T.R. Pearson, with a forward by Mitch Albom, author of Tuesdays With Morrie (also about ALS), it’s scheduled for release by Bloomsbury USA this fall.

For reasons that remain unexplained, a large proportion of people with ALS are physical and intellectual high-achievers. ALS ranks are filled with athletes like Lou Gehrig, scientists like Stephen Hawking and extraordinary entrepreneurs like Augie Nieto.

Many personal stories of the ALS experience describe a life trajectory that ascends steeply from youth to middle age and then suddenly is stopped by ALS. A period of intense depression after diagnosis often is described, sometimes mixed with anger, followed by a reassessment of life’s meaning and a coming to terms with death.

Nieto’s story begins this way too, but by the middle of the book, it takes another direction. From then on, the emphasis is on the coalition formed by philanthropist, entrepreneur and ALS patient Nieto; Sean Scott, head of what was then the ALS Therapy Development Foundation in Cambridge, Mass.; and late MDA President & CEO Bob Ross and his successor, Jerry Weinberg.

This coalition became the nexus of MDA’s Augie’s Quest, a fast-track ALS research initiative based largely at the industrial-scale laboratories of the ALS Therapy Development Institute (formerly the Therapy Development Foundation).

The quest has been fueled by new ideas at MDA about applying a business model to supplement its academia-based research in ALS, infusions of cash from MDA’s Augie’s Quest events, and Sean Scott’s creative intelligence.

Near the end of the story, Augie writes that his goal has been to “put a face on ALS and leverage all of the goodwill MDA had earned through the years. So when we developed our Augie’s Quest logo, I said I wanted ‘Augie’s Quest’ to be on the outer edge. I said I wanted to clearly describe the mission — ‘Cure ALS.’ I said I wanted ‘MDA’ in the middle because they’re our core, our support.”

Letter to the Editor Hi all you great folks, Dyer and trike I just finished reading my MDA/ALS Newsmagazine about exercise (“Exercise Your Options,” October). I have ALS and I found a great exercise tool — a large three-wheel tricycle with 24-inch wheels. I first learned of my ALS in 2003 and I’ve been riding my trike for the last three years, off and on. It works great because my balance has moved on with my disease, but I still can enjoy riding my trike because I can pull my wheelchair up beside it and get on. It’s great exercise and as I ride it I feel almost normal again, because I’m not using my walker or wheelchair. It’s a great help in exercising my ankles and knees, keeping them loose and stopping my legs from jumping at night when I go to bed. I’m now 64 years old. I’m more than glad to talk to anyone about trike riding, or any other concern about ALS. Charles Dyer 8142 North Seven Oaks Court Jonesboro, GA 30236 charlesdyer1943@bellsouth.net

by Amy Labbe

"It is one of the most beautiful compensations of life that no man can sincerely try to help another without helping himself."
— Ralph Waldo Emerson

Caring for someone with ALS may be one of the most difficult things a person will ever do. The physical and emotional demands caregivers face can be brutal, and often may seem insurmountable.

Caregiving literature details the ways in which caregiving can compromise health and well-being: limited exercise, poor nutrition, impaired immune function, skipped doctor visits, stress and anger, anxiety and more.

An idea slowly gaining favor, however, and referenced in two papers published in the July-September issue of Alzheimer’s Care Today, is that caregivers can actually benefit from the act of caregiving.

Two sides to the story

Jimmy Adams says taking care of his wife, Barbara, brought him joy and a sense of peace he wouldn’t trade for anything.

Although the toll on those providing long-term care can’t be denied, evidence shows positive emotional and physical benefits are correlated with helping behavior, says Stephanie Brown, health research scientist specialist at Ann Arbor (Mich.) VA Medical Center and assistant professor of internal medicine in the Center for Behavioral and Decision Sciences in Medicine at the University of Michigan.

In one study, Brown and colleagues examined the effects of helping behavior on mortality, looking at 423 older married adults over a five-year period and controlling for demographic, personality, health, mental health and marital relationship variables. They noted “individuals who reported providing instrumental support to friends, relatives and neighbors, and individuals who reported providing emotional support to their spouse had a 30 percent to 60 percent decreased chance of dying over the course of the study” compared to their non-helping counterparts.

The emotional-physical connection

How the act of helping positively affects the body remains a matter of speculation, but Brown and others suggest that the positive emotions generated by helping behavior may bolster caregivers’ overall sense of well-being, affecting such things as life satisfaction and the ability to cope with stress.

Positive emotions also have been shown (in various other studies) to lead to physical effects such as increased longevity and faster recovery from cardiovascular stress.

Finding the joy

Despite the obvious burdens involved, “when provided with proper respite and support, caregiving is often a joyful and beneficial experience for the one who gives,” says Stephen Post in his paper “Stumbling on Joy.”

The benefits to be gained, he says, are the moments of joy, the positive emotions and their associated effects.

A professor of bioethics at the School of Medicine, Case Western Reserve University in Cleveland, Post says joy can be found in little moments; it can be as simple as a smile shared between the caregiver and loved one, or a few quiet moments spent watching the sunset at the end of a hectic day. Some may find joy in the pride they feel over overcoming the difficulties involved in caregiving, or in the reassurance that comes with knowing a loved one is receiving the best care possible.

Caregivers can experience the positive emotions or “helper’s high,” Post explains, even in caring for someone with ALS who may not be able to offer a smile or reassuring touch “because there is still a person before them, and because the joy is not dependent on reciprocity.”

Post stresses the importance of respite and support as crucial variables in a caregiver’s ability to find joy in the caregiving experience.

“The benefits of caring and giving do not occur when people are overwhelmed,” he says. “So it’s important to provide support for carers so that they can find meaning and enjoyment in what they do.”

A sense of peace

Jimmy Adams, 55, of Tyrone, Ga., cared for his wife, Barbara, from the time she received her ALS diagnosis in November 2004 until she died on Aug. 26 at the age of 54. He says he wouldn’t take anything for the last five years with Barbara, and that he knows exactly the sort of joy Post describes.

“The pleasure I got, and the comfort knowing she was taken care of and she was in my arms and God was with us, took all the pain away,” he says.

Adams recalls many joy-filled moments that occurred during the time he took care of Barbara, such as how he’d scratch her nose for her when it itched, and how when he’d hit the right spot, “she’d just smile — she had the prettiest smile.”

One particular moment of joy that Adams remembers well happened before Barbara lost her speech, when he helped her reposition herself one day.

“She said, ‘I’ve never ever felt scared when you’re around,’” Adams says. “She made me feel like a king.”

Another joy Adams found in taking care of Barbara was finding new foods for her. “Until she was unable to eat, I’d try to come up with something to give her a different taste,” he says. “She might only eat one or two bites, but it was worth it just to see her smile.”

Adams agrees with Post’s assertion that finding time for oneself is crucial to a caregiver’s continued well-being and notes that Barbara’s parents would come sit with her while he ran out to get groceries or take some time for himself to unwind and relax.

“A caregiver’s just like everybody else,” he says. “They’re going to get aggravated and upset. Barbara’s parents coming over — well, it took the stress off me. It charged my battery.”

Treasuring moments

Brown notes that additional studies are needed to determine the breadth and depth of benefits associated with the act of caregiving. But even absent knowledge of all the how’s and why’s, it surely can’t hurt to recognize and treasure the moments of joy found in everyday caregiving.

The ways in which those joys benefit the body may be shrouded in mystery, but the warmth they bring the heart is immediate and sustaining, a gift worth holding onto and treasuring for its own sake.

by Jo-Ann Goldstein

Sam and Jo-Ann Goldstein of St. Louis have shared their journey with ALS since Sam received his diagnosis of limb-onset ALS in August 2005. In this fifth installment of an intermittent series, Jo-Ann discusses how ALS has changed their roles in life.

Every family is different, just as every progression and loss of function is different for each person with ALS.  But we all face role changes, both as a person with ALS and as a caregiver.

Unfortunately, Sam’s disease progression has been rapid and he now has no movement and very little speech. So, these thoughts are from my viewpoint. But we did discuss many of these feelings over the past two years and I know that I speak for him on some issues.

The biggest change we have had was for Sam to become the “taker” instead of the “giver” in the family. He had owned his own business and was used to doing for others, being the main supporter for our family and those of his employees. He was the one everyone called to ask about their cars (his business), music (his passion) or trivia questions (his phenomenal memory). Being able to always help others gave Sam great satisfaction and really defined who he was. Switching roles to become the one that others helped was an extremely difficult adjustment that took months.

Jo-Ann says Sam’s biggest adjustment was becoming a “taker” after being the “giver” in the family.

Through the help of a counselor, we both became aware that allowing others to give was a gift in itself. Trying to repay them was disallowing them the ability to be the giver. Let someone help you in and out of the car, let them bring in meals. We all know how good it feels to help others, so learn to accept the help.

Adjusting to changes was, for us, a depressing downslide. Many have years to adjust to using a power chair, traveling in an accessible van or using their brand-new accessible bathroom. Sam’s decline was so quick that he only used the bathroom two months before it just was too tiring, the van only has 1,500 miles on it and the power chair just isn’t comfortable any more. We went from enjoying the new tools to seeing them unused. Learning to prioritize what is important is a constantly changing role for each of us.

Guilt — that small word has such a big effect on our lives. Sam constantly was saying “I’m sorry for what you have to go through.” I think it was the first time in our 36 years together that he ever felt guilty about anything. I, on the other hand, have grown up feeling guilty about everything. As a caregiver, my guilt has centered on being healthy, being able to walk and go to work, even the smallest things like eating with a fork and scratching my nose. I feel guilty — even though I know I shouldn’t — about not being at Sam’s side constantly to do what he wants or needs, guilty about going to the park with our grandchildren or visiting them at school.

Denial, frustration and anxiety play huge roles for each of us. I had a lot of frustration when Sam refused to accept losses, such as the ability to work or to use a walker. My role became one of a bad guy. I had to be the one to say “no, you can’t do that anymore.” I hated being the nag, but it had to be done to assure his safety. It can be difficult to convince a person with ALS that using aids like a power chair and a lift actually increase your independence. It‘s all part of learning to live with ALS.

For me, the biggest role change was becoming a nurse, in addition to wife, mom and grandmother, and professional. I always said that the last thing I ever wanted to be was a doctor or nurse — I hate needles. But, since December 2006 when Sam got his tracheostomy and went on a ventilator 24/7, I’ve become an expert at suctioning, changing the trach, understanding the vent’s operation, giving medicines and even shots.

Another recent new role for me has been being Sam’s voice — to his doctor, nurses, family and friends. For someone who always was talking, telling stories and jokes, this change has been extremely frustrating. I try to convey his feelings and words as best as I can, but it’s not always successful. I’d recommend that each family talk early on about the important medical decisions that need to be made, when you’re not in crisis, so that everyone is on board with your choices.

The Goldsteins, attending an MDA/ALS support group meeting in 2006, visited with Reta Setzer, who also had ALS. Support groups are another way of helping families deal with their changing roles. (Reta Setzer passed away in September.)

Last, don’t forget to take care of yourself. If we don’t take time to enjoy ourselves — whether it’s gardening, exercising, reading, or going out with friends — we’ll be run down and feel too much anger at our role as a caregiver. It’s a full-time job and everyone needs a break.

My message to everyone is that we can change — we can do what we need to do when crises arise. To answer the question that I hear most often — “How do you do it?” — I say that it’s done out of love, that it’s my turn to be the caregiver. We don’t know what life has in store for us, but we can learn to handle situations with the help of family, friends and the support of the many wonderful charitable organizations. We don’t have to deny the anger, exhaustion, fear and all the other feelings that we all feel — but we can deal with them, get beyond them, and not let them be all-consuming.

by Alyssa Quintero

In February 2004, Leonard Picton of Ellicott City, Md., received a diagnosis of ALS. Immediately, Leonard, 65, and his wife, Lee, who has multiple sclerosis, went into ultra-financial-planning mode. For Lee, the question became, “Will we have enough money left to take care of me when Leonard’s gone?”

“When you get a diagnosis of ALS, you have to begin your financial planning immediately with an eye to Medicaid,” Lee says. “It’s not illegal, and it’s not unethical. Unless you’re rich, not very many people can afford the expenses involved with ALS without some kind of assistance.”

Leonard and Lee Picton met with an elder-law attorney following Leonard’s diagnosis of ALS, and rearranged their assets for Medicaid planning purposes. Since the costs associated with ALS and long-term care are high, Lee urges couples to make financial plans to protect the surviving spouse sooner rather than later.

Following Leonard’s diagnosis, Lee began shifting assets from countable into noncountable form.

First, they bought a new house in Lee’s name, and used assets to make home modifications to meet Leonard’s needs. Based on Maryland state law, they were able to legally divert money from Leonard’s retirement account into a special account in their son’s name that’s created for the support of the spouse.

Leonard’s assets are being liquidated by the monthly spend-down amount allowed by the state, $4,300.

“I estimate that Leonard’s assets will be depleted in about three years, and if he ever has to apply for Medicaid, I can point to this account and show that it’s received deposits at the spend-down amount [for Maryland],” said Lee, who consulted with a local elder-law attorney.

“I can show the paper trail and prove that the money going into the account in my son’s name was created solely for the provision of the surviving spouse.”

Their Medicaid planning “should keep us out of bankruptcy,” Lee says. “But everybody’s situation is not the same. While legal advice is expensive, it can save you a lifetime of aggravation.”

Medicaid Planning 101

The golden rule in Medicaid planning is that you shouldn’t assume that what worked for someone else will work for you.

Robert Fleming, a certified elder-law attorney in Tucson, Ariz., advises, “Accept what everybody tells you about the [Medicaid] system, but don’t believe it or act on it until you meet with a professional.”

For example, Fleming urges caution when married couples are spending down assets, because they could spend down too soon.

He explains that married couples should have as much as possible available in assets at the time that Medicaid initially assesses their resources, because in most states that amount determines how much can be retained by the unaffected spouse. So, there’s a period where you’d want to maximize your assets, before beginning to spend down.

Evaluating your assets

Medicaid eligibility is based on income and personal resources, such as bank accounts, stocks and bonds, loans or any resource of value owned by an individual or jointly owned by a married couple. Earned wages, Social Security benefits, disability insurance payments, retirement incomes, pensions and alimony all count toward the income cap.

Currently, an individual receiving Medicaid can keep $2,000 in total assets and have a monthly income of $1,869.

Certain assets aren’t countable. For example, most states allow you to retain one home and one vehicle outside the asset limit.

Various exemptions and allowances are available to married couples that aren’t available to single individuals. Federal law requires states to adhere to the spousal impoverishment provision that ensures that the “community spouse” (the one still living at home) isn’t left with little or no income or resources when the other spouse goes to a nursing home.

How it works:

• A resource assessment, or snapshot, is taken of the couple’s countable assets at the time of the ill spouse’s admission to a nursing home. This snapshot is the basis for calculating the community spouse’s share of assets, so it helps to have a large number of assets at this time.
• From the total combined countable assets, Medicaid assigns half to the community spouse, and $2,000 of the other half to the spouse in the nursing home. The couple must deplete the excess assets by spending down.
• The community spouse’s share is compared to the state’s minimum and maximum community spouse resource standards (2007 federal standards range from $20,328 to $101,640).

Here’s one possible scenario:

Alex goes into a nursing home and applies for Medicaid. The snapshot is made, and Alex and his wife, Michelle, have $100,000 in countable assets. The assets are divided in half, giving Michelle $50,000, while Alex is allowed to keep $2,000. The couple must spend down the remaining $48,000 from Alex’s share in order to meet Medicaid’s asset requirements.

Transferring assets is tricky business

Medicaid planning is a viable, legal option when your monthly income exceeds the income cap but isn’t enough to pay for long-term care. The laws are complicated and vary by state, so consulting with an elder-law attorney who specializes in Medicaid can turn rocky waters into smooth sailing.

Medicaid planning is complicated, and it pays to consult an elder-law attorney. Although expensive, an attorney can save money — and heartache — in the long run.

The temptation to move assets or put them in other relatives’ names is a common reaction, but can be fraught with financial danger, warns Judith Grimaldi, a certified elder-law attorney in Brooklyn, N.Y. She explains that hiding or sheltering assets isn’t a bad instinct, but it’s the method that counts.

“You have to be careful when you’re moving money. You don’t want to trip over a tax burden or make the situation any worse,” she says.

The Deficit Reduction Act of 2005 made it more difficult to transfer assets and still qualify for Medicaid.

• The state now will “look back” five years (three years under the old law) to examine all asset transfers during that time.
• Based on the transfer(s), the state can impose a penalty period during which you’ll be ineligible for Medicaid benefits.
• To calculate the penalty, the state divides the transfer amount by the state’s average monthly private-pay rate for nursing home care.
• The penalty period begins when you would otherwise become eligible for Medicaid. (Under the old law, the penalty began the month after the transfer was made.)
  
  For example:
  
  Julianne applies for Medicaid in March 2011. During the evaluation, the state finds that she gave her daughter a $50,000 gift in July 2007, making it subject to the five-year look-back period. To calculate the penalty, the state divides $50,000 by $5,000 — the state’s average monthly cost for nursing home care — and gets a 10-month penalty period. Julianne could become Medicaid-eligible in January 2012.

Planning for allowable transfers

According to the Centers for Medicare and Medicaid (CMS), certain transfers won’t hurt your Medicaid eligibility. This includes transfers to a spouse or to a third party for the sole benefit of the spouse; transfers to certain disabled individuals, or to special needs trusts established for those individuals; and transfers for a purpose other than to qualify for Medicaid.

Medicaid planning means rearranging your finances so that countable assets are legally spent or converted into noncountable assets and some assets are set aside to provide for the healthy spouse, if you’re married.

Gabriel Heiser, an elder-law attorney in Boulder, Colo., who specializes in Medicaid eligibility and estate planning, cautions, “Hiding money is illegal, and there all kinds of serious fines and jail time for doing that. But, there are legitimate ways to protect assets.

“It’s not a do-it-yourself project because it’s too risky. Not only are the state rules different, but there can be regulations that are hard to find and interpret, and there are always exceptions.”

To spend and convert countable assets, you can pay off the mortgage on your family home, make home modifications and repairs, pay off your debts, purchase a car for your healthy spouse, pay for care at home and prepay burial expenses.

For example, when Alex applied for Medicaid in the fictional scenario above, he and Michelle had to spend down $48,000. Michelle used the $48,000 to pay off their mortgage, as well as other debts.

Medicaid information can be found at www.cms.hhs.gov. To find out if you’re eligible, contact your state’s Medicaid office or Department of Health Services.

The contents of the article are intended to be general information and shouldn’t be construed as legal or financial advice. To find an elder-law attorney in your area, visit www.naela.org.

’Wings’ soars high for MDA

Award recipient Alex Cappello, right, with MDA ALS Division co-chairs Augie and Lynne Nieto, center and far left, and his wife Linda and their daughters.

Liz Claman, daytime anchor for the Fox Business Network, hosted the Wings event in Times Square for the third consecutive year.

The seventh annual Wings Over Wall Street gala held Sept. 20 at the New York Marriott Marquis in Times Square raised nearly $800,000 to benefit MDA’s ALS research program.

Some 700 attendees, including celebrities and New York financial leaders, gathered at the event, which was sponsored by the Credit Suisse Group.

Since 2001, Wings has raised some $7 million to benefit MDA’s ALS research program. The funds assist the research teams of Hiroshi Mitsumoto, co-director of the Eleanor and Lou Gehrig MDA/ALS Research Center at Columbia University in New York City, and Jeffrey Rothstein, director of the MDA/ALS Center at Johns Hopkins University in Baltimore.

Augie’s Quest gains momentum

The second annual Tradition of Hope Gala, held at the Hyatt Regency Century Plaza in Los Angeles Sept. 15, raised more than $630,000 to benefit Augie’s Quest, MDA’s research initiative to cure ALS.

Hosted by “Entertainment Tonight” anchor Jann Carl, who’s also an MDA national vice president, the event honored Alexander L. Cappello, chairman and CEO of the Cappello Group Inc. Cappello received the Robert Ross Founder’s Award for his outstanding contributions to MDA.

Some 250 guests were treated to a special performance by John Ondrasik, the Grammy-nominated singer/songwriter of Five for Fighting.

MDA’s Augie’s Quest has raised some $11 million for MDA’s fast-track ALS research program.

Galas fuel research efforts

Two MDA fund-raising galas raised more than $900,000 for ALS research this fall.

The 12th annual Field of Hope Gala, held Sept. 29 at South Gate Manor in Freehold, N.J., raised more than $415,000 for MDA’s ALS research program.

Chaired by former Oakland Raiders football player Phil Villapiano, the gala included silent and live auctions.

The second annual Night of Hope Gala, held Oct. 12 at the Ritz Carlton in downtown Atlanta, drew some 500 guests and raised more than $525,000 for ALS research. A highlight of the evening was a video featuring several local people with ALS.