Stories of Hope

Not only are biomedical researchers hoping for adult and embryonic stem cell research to be successful, but people living with life-threatening diseases and illnesses are as well. With successful research, treatments for diseases like Parkinson’s and Multiple Sclerosis can drastically change, as well as the rate of success stories of survivors. These are real people, who have experienced suffering and life-threatening accidents, sharing their real stories of hope for embryonic stem cell cures.

Michael Rubyan and Landon Krantz's Story

Stem cell research ban denies hope for cures and jobs for Michigan 's leaders and best

Michigan has problems keeping the best and brightest of its students in our state and Michigan 's ban on embryonic stem cell research is one reason why.

As two University of Michigan pre-med students interested in the life sciences and medical research, including the field of stem cell research, we would like the opportunity to start our careers in Michigan . But unless current state laws banning key aspects of embryonic stem cell research are lifted by the Legislature, we will be forced to seek professional opportunities in other states once we graduate.

We chose to study at the University of Michigan because life science research here is among the nation's most dynamic and vibrant. Ideally, we would like to stay in Michigan and build our professional careers here but because of the restrictive laws in Michigan we have a disincentive to stay.

Embryonic stem cell research provides hope of scientific progress for the 21st century as well as potential cures and treatments for millions of people. This research is advancing rapidly in states like Wisconsin, New Jersey, Massachusetts, California and Illinois. Those states are supporting all forms of stem cell research including embryonic stem cell research and making major commitments to the life sciences sector.

It is important that the Michigan Legislature recognize the value of this research. Michigan's laws not only discourage such research but make it a felony punishable by up to 10 years in prison and a $10 million fine. As members of the Student Society for Stem Cell Research at the U-M, we have seen firsthand how these regressive laws are driving Michigan's best and brightest minds to seek out scientific opportunities in other states where biomedical research is not limited.

Two years ago, our group's president spoke at a hearing about Michigan's restrictive stem cell research laws. A couple months later, he graduated from U-M and left the state to spend a year at Northwestern University in a state where embryonic stem cell research is supported. He is now attending the Stanford School of Medicine.

It is tragic that a scientific researcher in Michigan lacks the support that researchers have a couple hundred miles west in Wisconsin and only a couple hundred miles south in Illinois . It is unfortunate for our state's economy that research going on in other states is creating jobs and economic opportunity there when Michigan so badly needs it.

We believe now is a critical time for Michigan's Legislature to lift the ban on embryonic stem cell research so that students like ourselves can continue to develop into leaders in medical research here in Michigan.

Michael Rubyan and Landon Krantz are both juniors at the University of Michigan in Ann Arbor. They each testified Nov. 7 to the Michigan House Judiciary Committee in support of House Bills 4616-4618, which would ease restrictions on embryonic stem cell research and increase penalties against human cloning.

Kirk Profit's Story

Michigan Legislature Needs to Amend Outdated Restrictions on Embryonic Stem Cell Research

The 1997-1998 legislative session was faced with a number of difficult issues. Among them were a number of ethical considerations arising as a result of the rapidly expanding field of genetics and genetic research. At that time, the mapping of a number of genomes was taking place; and the successful cloning of certain mammals was progressing at a very rapid pace. As a result of these accelerating developments in the world of science, legislators in Michigan, together with a number of scientists and ethical experts, began to develop legislation to address at least three issues:

	Four-year-old Carson Booker has spent much of his short life battling a multitude of life-threatening illnesses, the most recent of which is hydrocephalus. Carson 's mother, Tera, had to stop working to accommodate trips to doctors, therapy and the care Carson requires.

“I feel like I have had an infant for four years now. He still uses a bottle, pacifier and diapers,” she said.

Scientists have said embryonic stem cell research may offer hope for children with Carson 's condition and the Booker family, who reside in northern Michigan, has hope that the state legislature will pass laws to allow this research in Michigan .

“We want to give Carson a chance to learn more and be a normal person in society,” Tera Booker says. “We want him to be able to play sports, live on his own and get married one day. If legislators put themselves in other people's shoes and saw how we live, they would make a change.”

The Bookers' ordeal began shortly after Carson 's birth June 16, 2003 with what they initially thought were symptoms of a virus.

“But a day or two after Carson got sick he stopped breathing, so we took him to the emergency room,” Tera remembers.

Doctors in Grand Rapids diagnosed Carson with bacterial meningitis. A day later, he had a stroke that paralyzed the left side of his body. Instead of attending preschool with other 4-years-olds, Carson spends his days at the Hope Network in Big Rapids ( www.hopenetwork.org ) for physical, speech and occupational therapy.

Hydrocephalus is a condition where abnormal amounts of cerebrospinal fluid accumulate in the ventricles inside the brain. This causes the ventricles to become enlarged and creates pressure inside Carson 's head. Part of the treatment is a shunt insertion, which drains the cerebrospinal fluid from the brain.

At one point, Carson was having 10 to 30 seizures a day. The Bookers have had to rush their son to the hospital in the middle of the night and constantly schedule doctor visits for routine tests. He takes four different medications at least three times each day.

Tera and her husband Stan wish Carson had the opportunity to live life just like his two older brothers. The eldest brother, Mike, 16, plays soccer at Reed City High School . Mark, 14, is the middle brother who plays football on his 8 th grade team at Reed City Middle School . Tera said she would like Carson to be in school but his behavioral and mental capabilities are that of a 12- to 18-month-old.

Regardless, the Bookers always include their son in their family activities. They love to pack up their fifth-wheel and go camping, fishing or hunting together. Usually Tera and her husband take Carson on long walks through the neighborhood and to the swings. Carson got his nickname “Tigger” after the Winnie the Pooh character because he loves to jump. Tera bought him a trampoline in the backyard so he can jump as he pleases. Still, everyone in the family wishes Carson could have a normal life.

Tera continues to concentrate on what means most to her in life, her family. She is focused on living life to the fullest every day especially for Carson 's sake. She prays Michigan 's restrictions on stem cell research will be changed some day soon.

Kelly Cooper's Story

	Frustrated with Michigan 's current restrictions on stem cell research, Richard Cooper reached out to the Michigan Citizens for Stem Cell Research and Cures regarding his daughter Kelly and her battle with Leukodystrophy. I would like to say that I think both the U.S. and more specifically, Michigan are absolutely wrong in their stand on stem cell research,” he said.

Kelly Cooper's Story as told by her father, Richard Cooper

Kelly was born in 1967 and we knew almost immediately that there was “something wrong” with her. She was born with cataracts and had both lenses removed by the time she was a year old. Over the next few years she had other physical problems - scoliosis, mild retardation and an uneven gait. Some doctors thought she had cerebral palsy; others thought it was a tethered spine. Having been Director of the Developmentally Disabled for Michigan Community Mental Health in several counties, I knew these diagnoses were not correct. The doctors and I had never seen a case quite like Kelly's before.

Eventually Kelly graduated from Grand Ledge High School and moved into her own small apartment where her mom could check on her frequently (we were divorced). One day I called Kelly from my home in Detroit . She said she was blind and didn't know what to do. I immediately called the police in Grand Ledge and told them to take her to the emergency room in St. Lawrence where I would meet them. Spontaneous blindness is sometimes associated with multiple sclerosis. The physician from the ER and I thought that may be her new diagnosis. We called in a specialist from Michigan State University who diagnosed Kelly with a genetic disease called Leukodystrophy. This is a disease I had never heard of despite having been in the medical field for 25 years. After a quick search on the Internet, I discovered that the United Leukodystrophy Foundation was having an annual meeting the following week in Illinois . My wife and I attended the meeting and met a scientist from the National Institutes of Health in Bethesda, Md.  She informed us they had a grant to study individuals with undiagnosed Leukodystrophy. Kelly fit their protocol.

She was admitted to NIH and has been seen each year for the past 12 years. With help from the Gnome Project we learned that she has a form of the disease called CACH (Childhood Ataxia with Central Nervous System Hypomyelination); by her physician, Raphael Schiffmann, M.D. He has informed me the research they have done on Kelly has aided them in their search for a cure or treatment for the disease. Normally death occurs in the first few years of life. He also determined that the reason Kelly has lived as long as she has is that approximately 50 to 60 percent of the defective gene is still working. He is now working with researchers in four countries in an attempt to find a treatment. I asked him about stem cell research and he said it was too early to say if it would be of benefit to Kelly.

Embryonic and adult stem cell research both are holding promise for treatments. As the father of a victim, I support further research into both. Politics can not stand in the way of advances in medical science.

I truly hate to say it, but I really don't care if Michigan ever allows stem cell research because I know there are countries around the world, even small ones like Israel , who are highly involved in such science. Fortunately we have the means to go wherever we need to in order to get help for Kelly. However our hearts go out to those who lack the ability to help their loved one by traveling to some other country for the help that they should get here.

Nicolle & Gabe Reslock's Story

To triumph over diabetes, Michigan lawmakers must ease state stem cell restrictions

With a blank sheet of paper in front of him, I asked my 9-year-old son Gabe to write about his favorite part of the Children's Congress we recently attended in Washington , D.C. , to advocate for increased funding of juvenile diabetes research. Not wanting to steer him in any way, I left him completely alone to think about those magnificent days spent with 149 other children and families dealing with diabetes. In my mind, I wondered what he would write about. There were so many different things to choose from. The absolute empowerment that the Juvenile Diabetes Research Foundation (JDRF) gives the children by letting them tell their stories about living with diabetes and why Congress needs to give money to help find a cure, the friendships that are made, the famous people that are met, the new environment that is being seen...the list kept going on within my mind.

Then Gabe brought me his now no longer blank sheet of paper. Here is what he wrote:

After I wiped away my tears, I asked Gabe "Why was that your favorite part of Children's Congress?" "I really liked singing on the U.S. Capital lawn with all the other kids with diabetes. I really like music, mom," he replied. And then I began crying again. That moment was not one that had crossed my mind as one that would be among his favorites. It was one of my more stressful days there. It was the first full day we were in Washington, D.C.

We were supposed to have met downstairs for breakfast at 7 a.m. and gotten on the bus at 8:45 a.m. to be transported to the U.S. Capital. However, after a sleepless night of high blood sugars and a cramping stomach, Gabe and I finally fell asleep around 6 a.m. only to awaken at 9:15 a.m. in a panic. We called the first number on the back of our name badge - Dr Kushner - who not only calmed me down and helped me with Gabe's situation but got me directions to the U.S. Capitol. We took a cab to the U.S. Capitol and made it to the performance on time. No shower, no breakfast, Gabe wore the same clothes from the day before and his blood sugar was 593.

Nicolle and Gabe in Washington, D.C.

The children got up onto the bleachers, each of them in their beautiful, bright yellow tee-shirts. It was 96 degrees and humid. Gabe walked off before the actual singing began. "Momma, I am gonna get sick." Thankfully JDRF was prepared for everything and Dr. Kushner, one of three volunteer doctors, and another volunteer offered to help. We stood in the shade as Gabe became ill on the Capitol Lawn just as Ms. Mary Tyler Moore began speaking.

Then, after just a few minutes, Gabe found enough courage and strength and got back up on the bleachers before the singing began and finished the performance with the other children. After the performance everyone went back to the hotel. Gabe and I went back to our room, quickly showered, regrouped and got ourselves back on track. The energy from the other families around us helped push us forward. We were, seemingly for the first time, not alone. Nor were we afraid to be tired and mad at this disease because we were surrounded by 149 other families that have been and continue to go through similar circumstances.

I didn't have to explain anything to anyone, we all just understood.

Fortunately, his blood sugars leveled out and we were able to focus on our tasks at hand. However, this moment, the moment that I look at as one of many that robs my son of his childhood and one that he looks at as one of his favorite parts of Children's Congress, is what Children's Congress is all about.

It is in finding that special moment within yourself where your life, no matter what is happening, triumphs over diabetes. Maybe it is speaking in front of large audiences, talking to a celebrity or flying on a plane. It shouldn't have surprised me that for Gabe, that moment comes in the form of music. He has always loved music of all genres, and he probably gets that from me. From the moment I could hold a flute in my hands I was playing it all the way to my college years.

I even played it for Gabe when he was an infant. His second-grade teacher plays the guitar, Gabe owns a guitar and he loved watching and listening to Steve Wariner play his guitar at Children's Congress. Music has the ability to change your moods; it can soothe you, spice up your attitude, set the tone, or help you relive a moment in history. It is a very powerful work of art, when done right, just as we saw on the U.S. Capitol lawn when 150 children and 3 celebrities sang "Promise to Remember Me." And, my son, in one of his scarier diabetic moments, used music to triumph over diabetes. Now that is a moment I will hold with me forever.

I am a registered nurse. As a health care provider, it is my duty to protect and preserve the sanctity of human life. It is a commitment that is sacred to me. But the same education that helped me see the warning signs of diabetes in my son when he was 17 months old doesn't allow me to understand why Michigan law prohibits embryonic stem cell research procedures that can be performed legally in other states. The cells researchers want to use to find cures for diseases such as diabetes, Parkinson's, spinal cord injuries, multiple sclerosis - the list goes on and on - are already doomed to be destroyed. Those cells could go toward possible treatments for diseases that are going to kill my son someday as well as thousands of other children. Currently, diabetes accounts for 810 deaths every 24 hours. It is incomprehensible to me how those who oppose this research say they are protecting life when their beliefs jeopardize the lives of so many innocent children.

Our state is blessed to have some of the best and brightest researchers in the world. Gabe and I are hopeful that someday, researchers in Michigan may find a cure for diabetes and other diseases. That will not happen unless Michigan's laws change. Until that day comes, I will remain dedicated to finding a cure for diabetes through advocacy, awareness, education and empowerment and by stressing the need for stem cell research. And this includes continuing to keep urging our lawmakers to think of Gabe singing "Promise to Remember Me" until they vote to change Michigan's archaic ban on embryonic stem cell research.

To learn more about Gabe visit his website at www.GabesGuardians.com.

Stewart VanAlstine's Story

Quadriplegic Petitioning for ESC Research

This is my story. My name is Stewart VanAlstine of Charlotte, MI, a small town about 20 miles south of Lansing . I am 58 years old and a 14-year quadriplegic. In 1993, I broke my neck while monkeying around in a push and shove game with co-workers in the construction industry. My neck was broken at the C4-C5 level, leaving me paralyzed from the chest down. I have no use of my hands; I have to wear wrist splits to keep my wrists straight. I am confined to my wheelchair. My neck was broken at the C4-C5 level, leaving me paralyzed from the chest down. I have no use of my hands; I have to wear wrist splits to keep my wrists straight. I am confined to my wheelchair.

VanAlstine at the Capitol lawn in Lansing

The hardest part of my injury is not being able to do the activities I used to enjoy with Karen, my wife of 36 years, my son Troy, my daughter Tina (Bliesener) and our four grandchildren - such as riding a bike, going on a walk or salmon fishing for a week every year in Manistique.

After a five-month stay in the hospital I began to mend. My healing process was accompanied by many different emotions and the realization that life goes on.

But I had to find something to do with my time and pursue an interest that I enjoy. After seeing many doctors in Lansing and Ann Arbor, I joined a list of volunteers in Ann Arbor to become a stem cell research participant and advocate to change Michigan 's current laws that prohibit embryonic stem cell research.

In 2005, I sent letters to both of our U.S. Senators in Michigan as well as several state lawmakers in the Michigan Legislature who serve our region, urging them to support legislation that would permit such research in our state and ease access to stem cell surgery. In early 2006, I launched a petition drive to ease restrictions on embryonic stem cell research in Michigan and started collecting signatures. The progress did not go fast enough, so I made signs for my wheelchair and participated in summer holiday parades in the Michigan cities Olivet, Charlotte and Nashville.

I have since met with aides of U.S. Senator Debbie Stabenow and Gov. Jennifer Granholm. Last November, I was at a stem cell seminar in Dearborn where I got my picture taken with Gov. Granholm and my story was featured in a newspaper article.

This year, I am turning up the heat even more on our Michigan representatives in Congress and the state Legislature. I now have over 1,200 signatures for my petition. In April I participated in the Vermontville Syrup Festival and did very well collecting signatures. In June I was in the Potterville Gizzard Fest Parade and also did well there. In April I had a meeting with U.S. Rep. Tim Walhberg's aide and four weeks later with Congressman Walhberg himself about stem cell research. When I got done he said he was going to update his knowledge on stem cell research.

I think I am doing well. But more work needs to be done. July 1, I was at the Battle Creek Airport watching the air show and getting signatures. On the Fourth of July I was in the Eaton Rapids parade. On July 7th I attended the Grand Ledge Car Show. On July 18th I was at the Lansing Lugnuts baseball game. I participated and obtained petition signatures in the Olivet parade July 28.

Very few people say no and argue the issue of embryonic stem cell research with me. I usually don't even have to ask for their support — most people just come up and sign the petition. The overwhelming majority of people I meet support stem cell research.

While I am not optimistic that researchers will find a cure for my condition in my lifetime, I am not going to let anybody pop my balloon and say it won't happen. I am optimistic that researchers within the next generation will be able to treat others who may unfortunately suffer injuries similar to my own.

Some day your loved ones or our troops may need stem cell surgery. Many others also could benefit from this important science. So let's get going. I am not going to stop until I get stem cell surgery….and then the salmon in Manistique had better watch out!

David Berkimer's Story

Hope for Adult Diabetes

David Berkimer will never get used to the idea he may lose his eyesight, his kidneys or the circulation in his body.

“I've been living with diabetes for 30 years,” said 47-year-old Berkimer. “People say you should get used to it, but you don't get used to it.”

David Berkimer, his son Nathaniel and his wife, Connie

Berkimer was diagnosed with Type 1 diabetes when he was 16. Type 1 diabetes is a chronic disease with no cure and occurs when the pancreas does not produce enough insulin to properly control blood sugar levels. It is usually diagnosed in children and young adults. Complications from the disease can include heart disease, blindness, nerve damage and kidney damage.

Researchers say embryonic stem cell research could offer hope to Berkimer and others living with diabetes, but the research is heavily restricted in the State of Michigan. The laws prohibiting such research make no sense to Berkimer. Michigan's current law on stem cell research is more restrictive than federal law and the laws in many other states.

“I'm so disappointed we would rather throw away embryos than use them,” he said. “I know this is a life issue, but they are throwing them away. That doesn't make any sense.”

Berkimer is referring to the four to five day old embryos frozen and remaining in in vitro fertilization clinics that researchers in Michigan cannot use for embryonic stem cell research.

Berkimer said he is fortunate to be able to control his condition with medication. He has maintained an active lifestyle, works full time and volunteers for a number of causes, but he is always concerned his health could deteriorate.

“It's always on your mind. It can happen any time,” he said.

Berkimer, a warehouse manager, was opposed to embryonic stem cell research for religious reasons. As he learned more about the issue and the potential embryonic stem cell research has to cure so many different diseases, he changed his view.

“I was opposed, but let's look at the big picture here. You throw something in the trash that could help people. That's not good,” he said. “I know when there is a chance something can help, you've got to at least look into it.”

Douglas and Marlene Laing's Story

Looking for Muscular Dystrophy Treatment

When Doug Laing couldn't lift his arm to lead the church chorus he directed, he knew something was wrong.

“I had weakness in my right arm and was unable to lift it high enough to direct the choir,” he said, recalling that day 20 years ago.

A physician diagnosed Doug with a rare, untreatable form of muscular dystrophy called Limb-Girdle, which affects voluntary muscles. Over a period of years those affected lose muscle bulk and strength. Many people eventually require a wheelchair.

Marlene and Doug believe embryonic stem cell research may hold a key to reversing his disability.

“We pray for more embryonic stem cell research to be done,” said Marlene. “Doug is now 65, but we pray he has many good years left. He will retire in December and we hope to be able to travel as much as possible before he ends up in a wheel chair.”

Doug's wife of 27 years, Marlene, says Doug's disease has been devastating to them as she has watched his muscles weaken for the past 20 years.

“It pains me to see him deteriorate,” she said from their home in Jackson . “He's a wonderful and talented person. He directs a men's chorus. The members tell him they will stay with him if he has to lie on the floor to direct.”

Doug, a University of Michigan computer program analyst, said he is thankful he is still mobile and that his disease has progressed more slowly than most. Although Doug can still drive and type, he struggles to stand at times.

“It is now affecting both of my arms and my legs are getting weaker,” he said. “Unless something happens, I expect nothing but deterioration.”

Doug has difficulty understanding how anyone can be against stem cell research.

“With muscular dystrophy there is no cure and no immediate hope for a cure unless embryonic stem cell research holds some sort of promise for myself and others with muscular dystrophy,” he said.

“The arguments against it don't seem reasonable to me,” he said. “A lot of people holding the anti-research position don't have immediate family in a situation like this. It isn't happening to someone they know.”

Danny Heumann's Story

Michigan Closing the Door on Getting Out of a Wheelchair

By Danny Heumann

I have been paralyzed for 22 years, and during that time I have dreamed about the three greatest moments of my life.

1) The day I was married.

2) The day my daughter was born.

3) And the day I hope is coming soon when I'm seated next to Michigan's Governor as the new legislation that eases our state's restrictions on embryonic stem cell research is signed.

Danny Heumann with his wife, Lynn, and their daughter, Kate

My future was forever changed Aug. 13, 1985, when I was an 18-year-old summer camp counselor in upstate New York . I was a backseat passenger in a car traveling with three other camp counselors. The driver of the car was speeding around a curve and lost control. He was killed and the two other passengers walked out without a scratch. There were no drugs or alcohol involved.

At the hospital, I was diagnosed as a T-6 paraplegic, with no movement or sensation from the chest down. I have not been able to walk or feel the lower half of my body since the night of my accident. The accident occurred two weeks before I was set to begin my freshman year at Syracuse University . After intensive care with pneumonia, surgery to stabilize my broken back, two months of inpatient rehabilitation and dealing with the many secondary complications (that continue today) associated with spinal cord injury, I started Syracuse . I graduated from Syracuse 's Newhouse School of Public Communications in 1991. After working to lobby legislators in Washington , DC for increased federal funding for neurological research at the National Institute for Health, I decided to go to law school. I attended the Washington College of Law at American University and graduated with my JD in 1998.

After my accident, my parents, along with relatives and friends established The Daniel Heumann Fund for Spinal Cord Research which has raised $5 million for basic scientific research in this country and around the world.

Being involved with research, I know how difficult it is for medical science to find cures for the many diseases and disabilities that plague the citizens of our state and country. However, a state enacting legislation based on fear and political pressure by faith-based groups makes my blood boil and my heart break. The impact of Michigan preventing embryonic stem cell research from moving forward is closing the door faster on my dream of getting out of this wheelchair and walking again. I want to do the things for my family that able-bodied husbands and fathers take for granted everyday.

Nothing will or can deter me from calling on the Michigan Legislature to lift the state's ban on embryonic stem cell research. We need to allow our scientists to do this research in an ethical manner.

Our state lawmakers have a moral obligation to allow Michigan 's world-renowned scientists to do the kind of work that is legally permissible in the overwhelming majority of states in our country and other nations around the globe. We need to support the scientific community's ability to study and test in Michigan the potential of unused embryonic stem cells that can bring about treatments and cures for countless diseases and disabilities. Otherwise, these stem cells will continue to be discarded as medical waste. Michigan needs to allow the parents who have created these excess embryos to decide how they want their excess embryos to be used or not used for life saving research.

Furthermore, letting our scientists pursue Somatic Cell Nuclear Transfer (SCNT) is the key to potentially unlocking the chains that now handcuff Michigan 's researchers. The only way this research can be deemed successful is if we allow our scientists to create patient-specific stem cells that can be immune from rejection, since the cells will come directly from the patient. As a result of this research, we could be the first state to create diverse stem cell lines that will benefit all members of society. For example, to help African American children and adults who suffer from Sickle Cell Anemia and Type 1 Diabetes.

I agree with those who say Michigan will need to strengthen its ban on human reproductive cloning. I disagree, however, with those who say embryonic stem cell research is not pro-life. This research represents the true pro-life position because it could save human lives and eliminate human suffering.

Three decades ago, in vitro fertilization for couples who could not have children was dismissed by some legislators and religious groups and leaders in Michigan as repugnant. Now, this science is commonplace.

Today, the IVF process is a frequently used procedure for couples who are having infertility issues. I should know: My wife and I used IVF to successfully conceive our now 3 1/2 year-old daughter, Kate.

I am not just fighting to see embryonic stem cell research legislation passed for myself so that I can someday walk with my family. As her father, I want to make sure that if my daughter gets a rare disease or suffers a spinal cord injury that she would not die or suffer as I have for the last 22 years.

My philosophy in life is that I live for today, but I hope for tomorrow. Let's give hope to the thousands of Michigan citizens who suffer from diseases and disabilities. We need to know that our lawmakers will enact legislation that brings hope for a better tomorrow, so our state and our scientists can use their knowledge to make all our dreams come true.

Danny Heumann is the one of the founding board members of Michigan Citizens for Stem Cell Research and Cures. For more information about Danny, please visit www.heumannlycapable.com.

Lee Noll 's Story

Dear Michigan, Don't Force Out My Biotechnology Jobs

By Lee Noll

As the owner of a small business in Livingston County, I love Michigan and wish to remain here with my family. Unfortunately, our state's current ban on embryonic stem cell research is making it more expensive for BioFlow to keep all of it's operations here.

Michigan's prohibition of embryonic stem cell research is among the nation's most severe (“ Group pushes state to lift restrictions on stem cell research ,” Oakland Press, May 10). House Bill 4616 introduced by state Rep. Andy Meisner (D-Ferndale) would remove restrictions enacted in 1978 and allow these cells to be used for research instead of being discarded as medical waste by fertility clinics.

Meisner's legislation is long overdue. Today, state law stymies potential biomedical and economic advances by Michigan-based researchers and employers. Scientists in Michigan face civil penalties of $10 million or felony charges punishable by up to 10 years in prison for conducting research that is legally permissible in most other states.

This policy is in stark contrast to states — such as Wisconsin, Illinois, Iowa, Massachusetts, New York and California, among others — which are aggressively promoting research activities on all forms of stem cells, including adult and embryonic, as well as encouraging companies like mine to establish operations outside Michigan. While en route to Lansing last month to attend a press conference endorsing Meisner's bills, I was called by recruiters in North Carolina and Texas urging me to move my company to their respective states.

BioFlow Technology, Inc. in Whitmore Lake manufactures and markets a bioreactor system capable of supporting the long-term culture of stem cells and maintaining their “stemness” for well over a year. The system can be used to culture both adult-sourced and embryonic-derived stem cells and their progeny.

Researchers worldwide want to use BioFlow Technology products to enhance the relevance of their research work to human health issues. The BioFlow system allows stem cells to be grown and function in an environment much more similar to how they would exist within our bodies than other methods now allow. The process also makes it possible to reduce the demand for embryo harvests and decrease the number of embryos needed for research.

More than 50% of the researchers developing stem cell technology believe that embryo-sourced stem cells have greater potential for solving human disease than alternate sources of stem cells. Start-up companies like BioFlow cannot ignore half of the potential sales market; we must satisfy our customers to succeed.

Without a change to Michigan's existing regulatory framework, BioFlow and other life science firms across our state confront a difficult choice: Relocate to states with less restrictive laws, or, at a minimum, create duplicate development facilities outside Michigan's borders.

Both options make the cost of operating a business in Michigan more expensive, driving away jobs and investment at a time when our state can ill-afford either outcome.

If our legislators are committed to boosting Michigan's biotechnology and life science sectors of the economy, they must allow our researchers to compete on a level playing field. It's time for the Legislature to bring Michigan laws on embryonic stem cell research into line with our neighbors in the United States and around the globe by approving House Bill 4616.

Lee Noll is CEO and President of BioFlow Technology, Inc. in Whitmore Lake . He can be reached at lnoll@bioflowtech.com

Kathleen Russell 's Story

Trembling Clock

My clock has tremors.
I was 39-years-old when I was diagnosed with young onset Parkinson's Disease. Nine years the clock has been ticking. Nine years since 1st stage of a 5-stage disease. Nine years since the words "young onset Parkinson's Disease" pounded my core. Hoehn and Yahr call it simply Stage One. I call it "let the tremors begin."

My clock has tremors.
STAGE ONE
1. Signs and symptoms on one side only
2. Symptoms mild
3. Symptoms inconvenient, not disabling
4. Tremor of one limb
5. Friends have noticed changes in posture, locomotion and facial expression

Nine years since the 1st stage of a 5-stage disease. I have just entered the 3rd stage of this disease. I call it the "Velcro is my friend" stage.

My clock has tremors.
STAGE THREE
1. Significant slowing of movement
2. Early impairment of equilibrium
3. Generalized dysfunction - moderately severe

I who lettered in field hockey, basketball, softball. I who pedaled the Colorado Hardscrabble 100 mile bicycle ride. I who climbed back to back 14,000 foot mountains in a weekend. I who can barely button a shirt or tie a shoe. I who now say "Velcro is my friend."

My clock has tremors.
I find no comfort in the words, "Don't worry there will be a new President in two years."

For you see,

My clock has tremors.
Hear me, Mr. President, the new frontier is right here. "I beg of you to grasp it" for you see:

My clock has tremors.
STAGE FIVE
1. Cachectic stage
2. Invalidism complete
3. Cannot stand or walk
4. Requires constant nursing care

I call Stage 5 "A mind imprisoned in a body." I who love to swim, to kayak, to hike, to talk.

My clock has tremors

Kathleen Russell is a resident of Ann Arbor, Mich.

Laura's Story

15 Minutes of Breathing

I learned a life lesson three years ago at age 14. I will never forget. After waking up in the hospital and not being able to move or breathe, I knew my life might never be the same. Laying in my hospital bed, the doctors came in and told me I was paralyzed from my neck down and would never be able to move or breathe on my own again. I began to cry and thought there had to be a cure; I couldn 't stay like this forever. My father and I started researching and looking for a cure, a treatment, anything that would improve my quality of life.

We had heard of stem cell research but never understood the significance of it or how it could help thousands or possibly millions of people with various diseases. Unfortunately, while learning about the unique promise of stem cells we also learned about the many restrictions that exist in the United States, and especially Michigan. Knowing that there wasn't any hope in Michigan or even in the United States, we were forced to look in other countries.

We searched and searched and finally came across a surgery in China that was using OEG cells. The surgery was showing significant improvements. Luckily, Dr. Huang was visiting Michigan soon. After meeting him and most of his Michigan patients, my dad decided getting the surgery would help me.

A year later, we flew to China. The flight was 20 hours long and uncomfortable. We waited a week and I had the surgery. I was a little scared because the hospitals didn 't have all of the amenities I needed. A week later I was finally able to get out of bed and I noticed a difference right away. I was able to breath on my own for 15 minutes. Before the surgery I tried to breath on my own several times but would run out of breath in about thirty seconds and needed my ventilator. After a year and a half of never being able to breath, 15 minutes was a relief. I also noticed much more movement in my neck and shoulders.

When I arrived back home in Michigan, I started physical therapy about five days a week. I gained muscles in my neck and shoulders that I hadn 't had since before my accident. I now had more independence; I didn 't have to worry about running out of breath or about getting dizzy from my head falling. Something many people take for granted, like breathing, made me feel one step toward being myself again.

Still in physical therapy, and starting to hit a plateau, I wondered what would come next. I prayed that some kind of research was going on in Michigan, but still nothing was happening. Now — at the age of 17 — and still hoping that something will change in the near future, I continue to work hard at keeping a healthy body so when there finally is a cure, I will be ready.

I'm optimistic and looking forward to the day I will be able to brush my own teeth, throw a football to my sisters and talk a long time with my family.

My hope is the Michigan Legislature will work together to help me realize my dreams by passing stem cell research legislation that makes treatments for people in my condition possible.

The story of the Coury family

Anxious for the Day when Diabetes is a Memory

	We are the Coury family. We are an average West Michigan family including mother, father, three boys and a dog.

We never dreamed we would be the parents of two diabetic children, but now it is hard to remember life before insulin pumps, blood testing, shots, and carbohydrate counting.

All was normal in our world April 1, 1998. Spencer was five and getting ready for kindergarten. Gabriel was four and enjoying his first year at preschool. Both boys were preparing for a new brother who was due at the end of the month.

April 2 our world changed. Gabe would do nothing but drink and began vomiting. The doctor sent us to the hospital with a diagnosis of diabetes. We had no idea how much our world had just changed. Gabe was rushed to ICU. His blood sugar dropped just from the re-hydrating with the IV. The next day he began receiving insulin and we found out how much we had to learn. We were overwhelmed to say the least.

We were beginning to adjust to this new routine when Nicholas was born, exactly one month after Gabriel's diagnosis. Things were starting to level out when we realized Nick was waking up soaking wet. It just couldn't be. There was no diabetes in either of our families. It couldn't be happening again. Aug. 18, 1999 and the prick of a toe confirmed we were wrong. Nicholas was diagnosed with diabetes at 15 months old.

We started the boys on insulin pumps in 2001. They have accepted this, and all of the challenges presented to them like the little champs they are. We have become involved in the Juvenile Diabetes Research Foundation. They have realized they don't have to sit and wait for someone else to solve their problems. The boys speak with large and small groups about their lives with diabetes. They raise money by going door to door in our neighborhood. Sometimes they simply hold the hand of someone with diabetes and offer their support and a smile. They have embraced whatever has come their way and they have become their own advocates. They are working to find a cure.

On behalf of my family, I ask that you consider the strength of my sons when you think about embryonic stem cell research. If researchers are allowed to explore every option, it will move them that much closer to a possible cure. We are anxious for the day when diabetes is a memory.

Charna's Story

Watching from the Sidelines

	My daughter's accident happened July of 2002. Charna was three years old at the time she sustained a severe spinal cord injury that has left her paralyzed in her lower extremities.   In the 4 1/2 years since her accident, my family's life in Flint, Mich., with our now 8-year-old daughter has been both rewarding and difficult. We are thankful she has regained some partial ability to move.

Rewarding, too, in the sense that we still have her and that her injuries have not proven as critical as her doctors first believed. Also, Charna is the happiest and most joyful person you could ever meet. I could go on bragging about her as I am a very proud mother.

The difficult part of her injury, for my husband and I, is watching her sit on the sidelines while all her friends are running around and playing outdoors. Even though I usually try to rig up some way for her to participate in all activities, at times it is just impossible. At school, she cannot even play on the slide for fear that other kids, who are also playing, may knock her off. She so loves to slide and feel the wind in her hair, but is unable to do so for safety reasons.

Charna plays in the pool as a toddler. She is now an 8-year-old.

Other difficulties include handling her bathroom duties. I have to make sure that she goes or it can become fatal. I have to watch every cold so that it doesn't turn to pneumonia. I have to watch for pressure sores. Medically the list can go on and on. Dealing with insurance companies is an almost never-ending challenge. They refuse so much that is or would be a benefit to my child. I couldn't even get a bath chair for her so I could safely bathe her, because they feel bathing is not a necessity, so I had to construct a sitting device for her. Charna is allowed only 12-13 weeks of physical therapy a year, which is one 60-minute visit a week. That meager amount of physical therapy is nowhere close to the amount of time she needs to help her condition improve.

	The list of obstacles that confront my daughter every day is virtually infinite. Society is not designed for those who are unable to walk, especially children. As hard as it is for a parent to witness the suffering of their child, I know it is harder on her. Yet she rarely cries or complains about her situation.

On those rare occasions when she expresses frustration, it is usually to question why it is that fate has made her legs unable to work.

I don't understand why there is such a problem with embryonic stem cell research. I wish those who oppose this vitally needed research would spend just spend one day with my daughter and I, to just witness what we endure together. There is nothing harder than seeing such a beautiful little girl so full of life being limited to completely enjoying it.

Right now, not only do I have to try and tend to her physical needs, I have been working real hard at her mental needs. I have been teaching her to stay positive and no door has been shut on her. Yes, it may take more for her to overcome the ignorance of others and a lot of inner-determination to achieve her goals in life, but she can do it.

Like I said at the beginning, she is a very happy young lady. She is full of life and determined to have happiness. I carry the hope and faith that she will walk again. I believe if God didn't want us to use embryonic stem cells he would not have given man knowledge to pursue this research. I heard President Bush call these embryos "Snowflake Babies" and that they all have a face. Well, my daughter has a face and she also has a name. I would like to introduce Charna to President Bush and to members of the Michigan Legislature who would deny my daughter's hopes for a future treatment because they believe embryonic stem cell research is somehow morally wrong.

These stem cells are going to be eventually thrown away, so I urge the president and the Michigan Legislature to let them “live” by helping others to have a better quality of life. Michigan is supposed to be the Great Lakes State . But how great can Michigan be when our lawmakers turn their backs on finding potential cures for helpless children?