Not That Man Anymore: A Message from Michael, a book written by Susan Hufford, a member of The ALS Association’s National Board of Trustees and the Board of the ALSA Greater New York Chapter and her late husband Michael Zaslow, the villainous Roger Thorpe on CBS’ The Guiding Light and the romantic David Renaldi on ABC’s One Life to Live, chronicles his fight against ALS.

One of the late television and film star’s greatest performances, said Hufford, was the year he battled ALS in real life and on ABC’s One Life to Live, increasing public awareness of the disease to a new level as he exerted himself by making public appearances to raise funds for ALS research. He traveled to Washington D.C. to participate in ALSA’s first National ALS Advocacy Day and Public Policy Conference and met with then Speaker of the House Newt Gingrich.

“It is not a book about disease and negativity,” Hufford said. “It is most definitely a book about hope. It is more of a love story and is filled with the perspectives of many people in the community including the physicians, fans, co-workers and even Rachel the next door neighbor who was five at the time.”

Not That Man Anymore, dedicated to the couple’s daughters Marika and Helena and to people living with ALS everywhere and to their families, also has many light moments and a spiritual side, said Hufford, who serves on the National Board’s advocacy, communications, development and research committees. “The spiritual component of the book is that there is a continuity of life,” Hufford said.

After Zaslow passed away, Hufford picked up where her husband left off but faced a conundrum of sorts as the editor.

“Michael started to write the book; he did not get very far. I tried…I wanted to be true to his words” Hufford said. “In the prologue I describe the dilemma. How do I represent his voice? I was faced with ethical issues such as ‘I do not have this particular scene, he did not have any notes about this, but I could write it anyway.’ My literary agent said, 'You cannot write this just from Michael’s point of view. It should be written from your point of view, too.' The book interweaves both of our stories.”

The book has received excellent reviews from such personalities as CBS correspondent Mike Wallace, author and columnist Amy Ferris and actor Alec Baldwin. Dorine Gordon, the president of the ALSA Greater New York Chapter Board, also was impressed.

“The way ALS unfolded for Michael really highlights some of the issues our patients have,” said Gordon, also an ALSA National Board Trustee. “It is really important to get that message out.”

Hufford is a practicing psychotherapist and has written 20 books. She has appeared on Larry King Live, 20/20 and Entertainment Tonight to discuss ALS and has produced five financially successful ALS Broadway theater benefits. The publication of the book is being accompanied by a series of book signings and television appearances across the country.

CytRx Testing ‘Fast Track’
ALS Drug in Clinical Trial

The ALS Association is encouraging people with ALS to consider enrolling in a Phase IIa clinical trial sponsored by the biotechnology company CytRx.

When it begins at ALS clinics and centers, also possibly including certified ALSA Centers^SM, people with ALS will be administered the drug, arimoclomol, developed by CytRx. The drug slowed down the progression of the disease in a mouse model of ALS (amyotrophic lateral sclerosis), also commonly referred to as Lou Gehrig’s disease.

CytRx, engaged in the development and commercialization of human therapeutics, needs to recruit 80 people for the clinical trial at 10 centers across the United States. According to the company, the drug was “well absorbed and well tolerated in two Phase I clinical trials in healthy volunteers” and was granted orphan drug status by the FDA earlier last spring.

“We are very excited about the potential of this compound to extend survival in patients and encourage participation in the trial,” said ALSA Science Director and Vice President Lucie Bruijn, Ph.D.

U.S. regulators also notified CytRx that arimoclomol has been given a “fast track” designation, a process under the FDA Modernization Act of 1997 that “facilitates the development and expedites the review of a new drug that demonstrates potential to address a significant unmet medical need for the treatment of a serious or a life-threatening condition.”

Arimoclomol is one of CytRx’s three orally-administered, small molecule compounds believed to function by stimulating a normal cellular protein through the activation of “molecular chaperones.” Since damaged proteins called aggregates are thought to play a role in many diseases, CytRx believes that activation of molecular chaperones could have therapeutic efficacy for a broad range of issues.

The co-principal investigators of the trial are Merit Cudkowicz, M.D.M. Sc., professor of neurology at Harvard Medical School, Robert H. Brown, Dphil, M.D., professor of neurology at Harvard Medical School, and Jeremy Shefner, M.D., professor of neurology at SUNY Upstate Medical University.

“We are very excited to move forward to begin testing of arimoclomol for ALS,” Cudkowicz said. “The work from Dr. Linda Greensmith’s laboratory supports moving forward to develop arimoclomol for ALS.”

For more information, contact Liz Simpson at the Massachusetts General Hospital Neurology Clinical Trials Unit Coordination Center at (617) 726-9122.

To read a summary of animal findings with the drug arimoclomol, please click here.

New Congressional Tax Incentives
for ALS Donors End December 31

The Katrina Emergency Tax Relief Act of 2005 (KETRA) signed into law by President Bush last September provides temporary incentives for gifts to all public charities, including The ALS Association (ALSA), not just charities providing direct relief to the victims of Hurricane Katrina.

The following are some of the key provisions in the new law that could benefit those considering making a gift to ALSA through December 31, 2005.

Temporary Suspension of Limitations on Cash Gifts

Under current law, itemized deductions for gifts of cash are limited to 50% of adjusted gross income (AGI) each year. KETRA temporarily suspends this deductibility ceiling for any cash gift made until December 31. Cash gifts made during this period are deductible up to 100% of the AGI.

Exception to Limitation on Itemized Deductions

The provision in the IRS code that requires that itemized deductions be reduced by 3% of the amount by which AGI exceeds $145,950 ($72,975 for married persons) is also waived for cash gifts made until December 31.

KETRA allows donors to accelerate payment of an outstanding pledge or substantial cash gift and use the full charitable deduction without limit this year.

Stock losses can be deducted to the extent allowed when the stock is sold. Donors can then gift the cash proceeds to ALSA without limit on the charitable deduction.

Appreciated stock can be sold and the cash proceeds gifted to ALSA; however, a capital gains tax must first be paid on any appreciation. The gift may be fully deductible against the donor’s AGI this year.

If someone has excess funds in an IRA or in other qualified plans and has assigned it to ALSA at death, this person can consider withdrawing funds and making a cash gift to ALSA now. Although such a withdrawal would increase the AGI, the charitable deduction would not be limited this year.

Before making any gift, consult with a tax or financial advisor regarding individual situations. For more information, contact The ALS Association’s Office of Gift Planning toll-free at (888) 949-2577, extension 212, or via e-mail at giftplanning@alsa-national.org.

Storms Did Not Batter Morale
of ALSA Louisiana Chapter

The ALSA Louisiana Chapter, impacted by two hurricanes that hit the area in September and October, is back on its feet, providing a full range of services of programs to people with ALS.

“The hurricanes created a great challenge for us in increasing awareness for what ALS is,” said ALSA Louisiana Chapter Executive Director Kelly Viator, who estimated that 25 people with ALS were directly affected by the storm in Louisiana and that 15 of them live in New Orleans. “We never lost sight of the fact that even though the hurricanes were terrible that we have ALS patients who need our help. The hurricanes did not take the disease away; it only created more stress for people who are already suffering.”

Weeks after hurricanes Katrina and Rita wreaked havoc along the Gulf Coast, the ALSA Louisiana Chapter was still trying to determine how its patients weathered Mother Nature’s fury.

In the storms’ aftermath, the chapter has helped families find housing, is working with FEMA on behalf of patients, and is contacting neurologists to let them know about the chapter’s services.

Immediately following Hurricane Katrina, the chapter began contacting ALS patients in the region to determine if there was anything they needed. The National Office of The ALS Association and several ALSA network chapters offered to help the chapter as well.

The National Office of ALSA distributed a press release and a radio public service announcement to media in Louisiana, Mississippi and Alabama asking editors to publicize the phone number of the Louisiana chapter. In addition, the National Office posted disaster relief guidelines on its website, including a crisis hotline. Neighboring chapters offered to donate equipment and made cash donations. These funds helped pay for temporary housing for patients and their families that had relocated out of state.

Before Hurricane Katrina hit, Viator invited members of the chapter’s support group, originally scheduled to attend a meeting in New Orleans that was cancelled due to the approaching storm, to participate in a conference call instead. Viator gave out the chapter’s phone number and asked people with ALS and their families to call the chapter after relocating. Even during the height of the storms, the chapter’s office telephone worked. She also has communicated with the local ALS community via e-mail before both storms hit.

The hurricanes did not stop the chapter from holding its first Walk to D’Feet ALS®; however, the location of the event was moved due to the increased workload of the local police department and its unavailability to assist the chapter in road closures.

In September, Viator attended summit meetings sponsored by the Louisiana Association of Non Profit Organizations (LANO), which is promoting a “give local” campaign.

“As you can imagine there are many non profits contemplating whether to keep their doors open at this point,” said Viator. “The focus is we were here before the storms and want to be here after the storms to continue doing the great work that we do.”

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Musical Duo Sees Opportunities in Working with ALSA

The performers and recording artists Lowen and Navarro, who held a web cast concert that benefited ALSA’s Greater Los Angeles Chapter in April 2004 after one of the group’s performers Eric Lowen was diagnosed with ALS, are doing more to help ALSA.

During their touring schedule, which runs through July 2006, the musical duo encourages ALSA chapters to host information tables in venues where the band will hold concerts. “It feels very fitting to be able to talk about it (ALS) on stage and have somebody out in the lobby to answer the questions that are going to come up,“ Lowen said. “I really like that.”

The web cast raised nearly $8,000, including $5,200 from the sale of a $50 DVD set. Fans across the country and around the world viewed the live web cast where the two singer-songwriters reunited with members of their original band with whom they had not played in 12 years. To date, the event has raised almost $13,000.

“We wanted to do something directly for the L.A. Chapter because they were directly helping me,” explained Lowen, of the neo-folk band.

Through the Greater Los Angeles Chapter, Lowen has had access to a scooter and a scooter lift, a walker and a wheelchair. A tall musician with long flaxen hair, he has worked with case manager Pedro Loza at the chapter; Loza gave the singer-songwriter the phone number of the chapter’s executive director, Fred Fisher.

“The chapter has a tradition of engaging families in the fight against ALS,” Fisher said. “Each family finds their own way to participate, make an important difference. Dan (Navarro) and Eric use their musical talent to increase awareness and raise funds to support the chapter’s patient services programs as well as search for a cure.”

Lowen and Navarro have played in more than 90 cities internationally during the past 16 years; some locations have included Washington, D.C; Minneapolis; Chicago; Oslo; Stockholm; and Cannes, France.

Recently, Lowen and Preston Sturges penned a song titled, Learning to Fall, a tune that explores Lowen’s reactions to having the disease. The song appears on an album the band will release.

Lowen believes that his diagnosis has affected his working on stage in front of live audiences. “I feel more of immediacy when I’m performing. I feel more of an emotional connection.” He uses a walker when he’s on stage, and their road manager must carry him up steps to the stage.

Navarro agreed with Lowen’s assessment about his performance abilities. “Guitar playing has deepened with Eric. He’s coming from a more spiritual place in terms of what he’s doing.”

To read Lowen and Navarro’s concert schedule through 2006, visit http://www.lownav.com/shows/index.html.

To purchase the band’s DVD that benefits the Greater Los Angeles Chapter, e-mail one of the following addresses: tonya@alsla.org or gretchen@alsla.org. Note you would like to order Lowen & Navarro’s – Live at Kulak’s Woodshed.

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Ironman Warriors Elevate ALS Awareness at Triathlons

Not many people could participate in a grueling day-long sports event where participants must complete a 2.4-mile swim, a 112-mile bike race then finish a
26-plus-mile run in the sweltering heat. But that’s just what “Ironmen” Todd Taranto and Jonathan Blais did this fall. Taranto, a resident of Wheaton, Ill., completed the Ironman-Wisconsin 2005 triathlon in around 15 hours and raised more than $18,000 for ALSA’s Iowa Chapter on September 11 in Madison, while Blais swam in the Pacific Ocean then biked and trekked through the jagged lava fields of Kona, Hawaii, last month.

When asked about his motivation for completing the triathlon, Taranto said, “I did it for Ken.” The person who Taranto refers to is his close friend and fellow West Point classmate, Ken Nadermann. Nadermann lives in Cedar Rapids, Iowa and has been battling ALS since 1993, when he returned to the states after serving in the Gulf War.

Amazingly, Taranto did not have to do any fundraising; through the Janus Charity Challenge, he posted his participation in the triathlon on the organization’s website. Contributions arrived from a plethora of places around the globe including Seattle, Midland, Texas, Japan and Germany.

“Janus provides a vehicle to help you solicit funds,” explained Taranto. “I took advantage of that. Over a period of six to seven months, I let the word out to friends and family and sent out periodic updates to people. I never asked for donations but let the people who know Ken to pass on the link, so others would read it.”

The ALSA Iowa Chapter’s Executive Director, Jason Lee, called Taranto’s donation “a surprise.” “We’re really grateful he chose to work with us and participate in a vision to serve ALS families across the state,” Lee said. Lee stated the funds collected will allow his chapter to provide services and start a Walk and a support group for Eastern Iowa, the area where Nadermann resides.

Blais – who also goes by the nickname “Blazeman” – finished the Hawaiian Ironman Triathlon Championships in October with an ending time of 16 hours: 28 minutes: 56 seconds. What separated Blais from other contestants in the triathlon: He is an ALS patient.

Blais also has gone by the pseudonym “Blazeman” for the past few years. He obtained the moniker while residing in San Diego, where he taught children with emotional and developmental challenges at the Aseltine School. He also calls himself “ALS Warrior Poet.” This epithet references Blais’ high school, the Seekonk Warriors and explains his love of poetry, literature and outdoor sports. This enthusiastic sportsman hoped his former pupils watched him compete as he used to show them tapes of other Ironman competitions at Aseltine. Undoubtedly, the Blazeman is an inspiration to both his former students and his fellow athletes.

'Munchkin' Adds Yellow Brick Road
Touch to Salina Walk to D’Feet ALS

The mayor of the Wizard of Oz ’s Munchkin Land, actor Mickey Carroll, was proud to cut the ribbon in Kansas at the Salina Walk to D'Feet ALS® on October 1. Carroll is now 89 years old and was 21 when The Wizard of Oz was made. Judy Garland, a personal friend of Carroll, asked him to play the role. He was interested in attending the ALSA Keith Worthington Chapter Walk because he personally met Lou Gehrig. Retired twice and living in his hometown of St. Louis, Carroll spends his time raising money for charity. The executive director of the chapter, located in Prairie, Kansas, is Beckie Cooper.

In the September issue of ALSAexchange, a story about a Pennsylvania couple who participated in a fundraiser for ALS by recreating stages of the Tour de France, incorrectly stated that Susan and Leonard Lodish raised $100,000 in the last 10 years. The actual amount is $600,000.

ALSA Board Member Releases Book About Emmy Award-Winning Husband’s ALS Fight

CytRx Testing ‘Fast Track’ ALS Drug in Clinical Trial

New Congressional Tax Incentives for ALS Donors End December 31

Storms Did Not Batter Morale of ALSA Louisiana Chapter