Thanks again to our newest NF heroes

 

These sponsors helped us raise $2,640 for The Children’s Tumor Foundation:

 

Mr. Jeff Scheller

Ms. Florence Anne Kohut

Mr. Aiden Long

Mr. and Mrs. Bruce C. Neary

Mr. and Mrs. John H. Oostdyk

Mr. Albert J. Stahl

Mr. and Mrs. Robert H. Speight

Mr. Roy Larsen

Mr. and Mrs. Bruce V. Koczman

Mr. and Mrs. James W. McCombs

Mr. Richard D. Kroll

Mr. Greg Cambeis

Ms. Kathleen Sommers

Ms. Katy Laundrie

Ms. Amy Zambrano

Mr. and Mrs. Richard Gifford

Mr. Rob Moll

Mr. Gary Gnidovic

Mr. and Mrs. Dan Carver

Mr. Richard Heffner

Ms. Dee Lamorte

Ms. Judy Scheller

Mr. and Mrs. Philip Benyola

Ms. Heidi Peck

Mr. and Mrs. Carleton W. Westerlund

Ms. Cherie Carl

Mr. and Mrs. Nicholas P. San Filippo

Mr. and Mrs. Robert A. Mack, Sr.

Mr. and Mrs. John J. Bogosian

Mr. and Mrs. Roger L. Faulkenbury

Mr. and Mrs. James J. Jensen

Mr. and Mrs. Michael Trapani

Mr. and Mrs. Mark Smith

Ms. Sara Mummolo

Dr. and Mrs. Gary S. Cuozzo

Mr. Tony Papalia

 

 

Here is the summary of another study that I’ll be including in my letter to The Children’s Tumor Foundation to encourage them to better educate and support families in regard to ALL possible outcomes of this debilitating disease.

NF1: Psychiatric Disorders and Quality of Life Impairment

Neurofibromatosis type 1 (NF1) is often associated with psychiatric disorders, which are more frequent in NF1 than in general population (33% of patients). Dysthymia* is the most frequent diagnosis (21% of patients). There is also a high prevalence of depressive mood (7%), anxiety (1-6%), and personality (3%) disorders. The risk of suicide is four times greater than in the general population. Bipolar mood disorders or schizophrenia appear to be rare. The impaired quality of life associated with NF1 may play an important role in the development of psychiatric disorders. Quality of life assessments may help to identify a population at high risk.

*Dysthymia — depression; despondency or a tendency to be despondent

Thanks again friends! May your generosity be returned a hundred-fold!

Long Beach 13.1

We did it … together! Our first half-marathon. Mike in 3:28:17; Chris and D in 3:42:09. Jeff manning the NF tent for 4:00:00+.

Total donations on our behalf to the Children’s Tumor Foundation$2145 $2170 $2220 $2345 $2370 $2490 $2590 $2640.

In honor of Gabriel Gifford Scheller.

John 25:11

Update 10/21/08: My original goal for the Long Beach 1/2 marathon was to raise $1000 for the Children’s Tumor Foundation. After Gabriel died, I increased our goal to $5000. Memorial donations in the amount of $1945 have been recorded in Gabriel’s name. Combined with our race sponsorships, we’ve raised a total of $4,435 $4,535 $4,585 for CTF. Again, many thanks to all who’ve given so generously!

Update II, 10/23/08: The NF Endurance Team slide show from Long Beach is up. Together our team of 20  raised $10,000, $2590 $2640 of it on behalf of Team Scheller.

Go Team Scheller!

$1810 $1830 and Counting!

Tomorrow is Race Day!

Wake Up Call 5 AM … Yikes!

Go Team Scheller!!!!!!

Donate Today!

Victory on Parity

From NAMI:

Victory on Parity!

October 3, 2008

By a vote of 263-171, the House this afternoon gave final approval to the Paul Wellstone-Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 as part of the Emergency Economic Stabilization Act (HR 1424).  President Bush is expected to signed the legislation late today or early tomorrow.

A Triumph for Consumers and Families

This victory in the House ends a nearly 20 year effort to require group health plans to cover treatment for mental illness on the same terms and conditions as all other illnesses.  NAMI is extremely grateful for the tireless work of advocates from all over the nation that contacted their Senators and House members to push for this landmark legislation.  The advocacy voice of people living with mental illness and their families made a tremendous difference in securing this long sought victory.

NAMI also salutes the leadership of the sponsors of parity in Congress including Senators Pete Domenici (R-NM), Edward M. Kennedy (D-MA), Mike Enzi (R-WY) and Christopher Dodd (D-CT) and Representatives Patrick Kennedy (D-RI) and Jim Ramstad (R-MN).  Today NAMI also remembers the contributions of the late Senator Paul Wellstone (D-MN) in bringing parity forward.  After nearly 20 years, their efforts have resulted in mental illness treatment no longer being subject to 2nd class status in our health care system.

What Happens Next?

President Bush is expected to sign HR 1424 very quickly in order to restore confidence in sagging credit markets.  The parity law becomes effective 1-year after enactment of the bill.  This will mean that group health plans will no longer be able to impose limits on inpatient days or outpatient visits or require higher deductibles or cost sharing for mental illness or addiction treatment that are not also applied to all other medical-surgical coverage.

There is a special effective date rule for collective bargaining agreements that would delay imposition of the parity requirements until the next collective bargaining contract goes into effect.  The law requires that the Departments of Labor, Health and Human Services and Treasury issue regulations within 1 year, although failure to issue such regulations will not delay the effective date of parity.

In the coming weeks, NAMI will be developing educational materials and guidelines on how parity will impact insurance coverage for consumers and families.  For now, NAMI advocates can celebrate a landmark achievement!  

Spiritual Evolution

 
Harvard Medical School professor George E. Vaillant was the speaker at yesterday’s UC Irvine Psychiatry and Spirituality Forum meeting. Vaillant is Director of Research for the Department of Psychiatry at Brigham and Women’s Hospital.  His research has involved charting adult development and the recovery process in schizophrenia, heroin addiction, alcoholism, and personality disorders. He is the Director of the Study of Adult Development at the Harvard University Health Service, which has prospectively charted the lives of 824 men and women for over 60 years. Vaillant has been at the helm for 30 of those years.
 
Vaillant titled his lecture Positive Emotions, saying that spirituality is another name for positive emotions and psychiatry doesn’t talk about positive emotions, religion does. The lecture wasn’t as thorough as I would have liked, but the book sounds intriguing.
 
Here are my notes:

1. Introduction

  • Negative emotions are about me and now, while positive emotions are future and other focused.
  • [Positive?] emotions are the unwelcome guest at the academic table. This truth is so dramatic that the leading text of psychiatry includes 1-600 lines about:
 
sin
terrorism
shame
anger
anxiety
depression
 
    but only
 
5 lines about hope
1 line about joy
0 lines about love
0 lines about compassion
0 lines about forgiveness
 
Vaillant had to delve into hymns, psalms and prayers to find such words. He says religion, for all its defects, allows us to pull positive emotions up into consciousness.
 
  • The average Fortune 500 company lasts 40 years; most family fortunes are gone after 3 generations; most nations after 300 years. The world’s great religions are all committed to compassion and unselfish love. All have lasted 1400 years or more.
  •  45 year olds-to-75 year olds with strong community involvement become less religious, more invested in grandchildren, etc. Same group experiencing bad life events that are not self-inflicted (eg. philandering, alcoholism), increase religious involvement.
  • Brain continues to myelinate until age 60. Parts that myelinate in adult life connect passions to fore brain and social judgment. Thus, 70 year olds have less trouble with depression, impulse control and anti-social behavior than people half their age. The heart and brain grow in simultaneous awareness.
  • Compare a golden retriever to a clergyman. Put both in a trunk. Drive around in the desert for an hour. Ask yourself: Which one will be happy to see you when you open the trunk? Maybe it’s not only humans that God constructed in his own image.

 

2. Mental Health Scales

The Four Fs (me focused) [did he mean 3 Fs and an L?]
Fight
Feel
Feed
Lust
 
PANAS (Positive/Negative Affect Schedule, positive emotions):
Interested
Excited
Alert
Active
Attentive
Enthusiastic
 
  • Induce positive emotions, scores go up; induce negative emotions, scores go down.
 
Positive Psychology (introduced 1999):
Happiness
Contentment
Good Cheer
Well-Being
Pleasure
 
  • No place for passion or joy on scale.
  • Freud thought awe was an infantile emotion.
  •  1943 Antoine de Saint-Exupery: It is only with the heart one can see rightly; what is essential is invisible to the eye.
  • Don’t believe everything you think.
  • 1943 Autism recognized as a relational rather than cognitive ailment. Attachment is different from cognition.  

 

Vaillant’s Scale (unique):
Faith/Trust
Compassion
Hope
Love
Joy
Awe
Forgiveness
Gratitude
 

3. Case for Spiritual Evolution

Murder rate in 1300 50 times what it is today. In the 19th century, US spent more on defense than health care. Now inverted. In 1900, both the World Health Organization and Boeing 747 were equally unlikely dreams. Nobel Peace Prize and Olympics instituted.

 

  • Real Darwinian success evident in unselfish love.
  • Religion may kill many, but so do automobiles.
  • Religion is just as dangerous as new-fangled tranquilizers.
 
4.  Q&A

 

  • Hippocratic Oath can be summed up as: Don’t do unto others what you wouldn’t want them to do unto you.
  • Love and service are vital to healing.
  • Found nothing in medical library about joy. One of the most powerful ways to produce joy is for a lost person to be found (peek-a-boo, sick person recovers, etc.). Not love affairs; affairs all about me.
  • AA meetings: more consistent hugs than anywhere else. Hugs heal, invite expression of “poor me’s.”
  • Psychiatrists: overpaid, overworked. [and yet, we’re grateful for the good ones]
  • 10 years hard data proves AA works better than psychotherapy for treating alcoholism.
 

Support NF Research

NF Endurance Team 2008

Guess who’s training for the Long Beach Marathon? Actually I’m settling for a half-marathon my first time out. My son Mike, some friends and I are doing it together. We’re raising money for neurofibromatosis (NF) research. The race is October 12, but you can invest in our effort now. To sponsor Mike, click here. To sponsor me, click here. (Be sure to watch the short video too.) Our goal is to raise $2500 each in memory of Gabriel Scheller, our NF hero.

 

NF Endurance Team 2008

NF Endurance Team 2008

It’s official. Mike and I have registered for the Long Beach Marathon to raise money for neurofibromatosis (NF) research. Now his six cycling friends and my one jog/walk buddy need to sign up. Mike has been training faithfully, while his mother has, well, been doing her best. Yesterday, I walk/jogged 6-7 miles, I’d guess.

The race is October 12, but you can sponsor us now. To sponsor Mike, click here. To sponsor me, click here. Be sure to watch the short video too.

Gabe was diagnosed with NF when he was 6 months old. Some of his closest friends didn’t know he had this disease, even though he lived with all these symptoms:

  • cafe-au-lait spots
  • macrocephaly
  • skull deformities
  • scoliosis
  • 100+ pea-sized sub-dermal tumors
  • a spattering of topical skin tumors
  • Attention Deficit Disorder
  • Depression

 

If you loved Gabe or were impacted by him and/or his work, why not support us in this effort? He is our NF Hero. Perhaps you’d even like to join us on October 12. If so, register here and let us know. Our goal is to raise $5000. We’d like to see more research into the link between NF and mental illness and will be communicating this desire to the Children’s Tumor Foundation.

Many blessings~

 

 

Depression: Out of the Shadows on PBS

I wish I’d seen this documentary months ago … then I might not have missed or misread the warning signs for suicidal depression that Gabe was exhibiting. These symptoms are used to diagnose adolescent depression, but could just as well have described my 23 year old:

  • Depressed mood or irritability (being extra-sensitive)
  • Decreased interest or pleasure in all or most activities
  • Weight change (up or down) or appetite disturbance (increase or decrease)
  • Insomnia (not able to sleep) or hypersomnia (sleeping too much)
  • Difficulty with psychomotor tasks (doing things very slowly)
  • Fatigue (tiredness) or lack of energy
  • Feeling worthless
  • Difficulty with concentrating, thinking or making decisions

 

Other warning signs include:

  • Sudden behavior changes
  • Anger, agitation or irritability
  • Risk-taking
  • Giving away prized possessions
  • Withdrawal from social groups
  • Huge changes in dress and appearance
  • Constant boredom
  • Extreme sensitivity to being rejected or failing at something
  • Frequent complaints of physical symptoms (for example, stomachaches, headaches, sore throat) without a clear physical cause
  • Missing lots of school
  • Trying to run away from home
  • Having a hard time paying attention and concentrating

 

From the PBS depression fact sheet for adolescents and college age students:

“One out of four young adults will experience a depressive episode by age 24. Depression is caused by a variety of factors, including genetics, environment and adverse life stressors. Teens that have chronic illnesses or have experienced trauma are at greater risk of developing depression. …

When your teen goes away to college they are exposed to many stressors that can lead them to develop depression or other mental illnesses. Moving away from friends and family, taking care of yourself for the first time (money, laundry, etc.), having to make new friends, and being academically challenged can be overwhelming. It’s harder to know how your teen is doing when they are away but you should know that surveys have shown that about 50% of college students report feeling so depressed that they have trouble functioning. Many colleges have established good mental health awareness programs and services to aid students. It’s a good idea to know ahead of time how these issues are handled.”

You can plug in your zipcode here to find out when Depression: Out of the Shadows airs on your local PBS station. I only caught part of it last night, but learned so much in that brief introduction that I’ll be watching and recording the entire show on station KCET tomorrow evening at 7pm.

The Depression: Out of the Shadows website includes plenty of informative resources and links. If you suspect that you or someone you love is suffering from depression, get the help you need. 

Update 5/24: I apologize to those of you who were looking for this documentary on KCET last night at 7pm. It was only on digital KCET and is not listed for the coming 2 weeks. I’ll post the next air time when I can confirm it.

Update 5/26: Depression: Out of the Shadows will air on station KOCE (Huntington Beach) on Thursday, May 29 at 8pm. I’m setting my Tivo this time. (At 7pm, a show called Men Get Depression Too will air.)

 
 
 
 
 
 

 

Grieving a Suicide

 

Wheaton College professor John Walford gave a passionate testimony about his brushes with suicide at a recent Wheaton chapel service. There have been three recent alumni suicides in the past year, and the university is rightly concerned about a trend that reflects an alarming three-fold increase in youth suicide. 

While I commend both the university in its desire to address the issue with a strong exhortation and Dr. Walford for his transparency, the message fell short in that it lacks the expert advice that might have provided students with consolation, deeper understanding and tangible help.

Today I’d like to commend to you InterVarsity Press editor and Christianity Today columnist Al Hsu’s excellent book, Grieving a Suicide. I met Al in February at the National Pastors’ Convention and noticed this book on a display table. After Gabe’s death and before we left for the services in New Jersey, I asked him to send me a copy. It was waiting for me when we returned to California. I’m reading it for the second time and ordered 10 more copies for family and friends. (I received the shipment yesterday and will distribute the books forthwith.)

Al’s book is dedicated to his father, Terry Tsai-Yuan Hsu, an accomplished electrical engineer who took his own life after a debilitating stroke. Al brings to the topic both a survivor’s understanding and good scholarship.

The book is divided into three parts:

  • When Suicide Strikes—Shock, Turmoil, Lament, Relinquishment and Remembrance
  • The Lingering Questions—Why Did this Happen? Is Suicide the Unforgivable Sin? Where is God When it Hurts?
  • Life after Suicide—The Spirituality of Grief, The Healing Community, The Lessons of Suicide.

 

In Part I, we learn that “the grief that suicide survivors experience is described by psychologists as ‘complicated grief.’ … Those of us who experience complicated bereavement are actually grappling with two realities, grief and trauma. Grief is normal; trauma is not. The combination of circumstances is like a vicious one-two punch. We are grieving the death of a loved one, and we are reeling from the trauma of suicide. The first is difficult enough; the second may seem unbearable.”

Al categorizes the resultant turmoil as follows:

  1. Shock, disbelief and numbness–“‘The immediate response to suicide is total disbelief,’ writes a suicide survivor. ‘The act is so incomprehensible that we enter into a state where we feel unreal and disconnected.'”
  2. Distraction—“Friends of survivors may need an extra measure of patience … traumatic grief has caused an inability to focus.”
  3. Sorrow and Despair—“Survivors often fall into a state of melancholy and depression … In some ways we may unconsciously identify with the hopelessness that precipitated our loved one’s death.”
  4. Rejection and Abandonment—“Suicide feels like a total dismissal, the cruelest possible way a person could tell us that they are leaving us behind … So we feel abandoned. Our sense of self-worth is crippled. All our doubts and insecurities are magnified a hundred-fold.”
  5. Failure—“Feelings of failure may surface any time a survivor had a caretaking role … Our feelings of regret and guilt may seem overwhelming, but they eventually subside as we realize the death was not our fault.”
  6. Shame—“Beyond the combination of normal grief and traumatic grief, survivors of suicide suffer an additional insult to injury—the societal stigma that surrounds suicide.”
  7. Anger, Rage and Hatred—“We may hate our loved one for doing this to our loved one. We grieve the suicide and rage against him simultaneously.”
  8. Paralysis—“A simple phone call had triggered an anxiety-filled reaction.”
  9. Sleeplessness—“We lie awake, with our thoughts flying in all directions.”
  10. Relief–“About half of suicides are at least somewhat expected due to ongoing depression or patterns of self-destructive behavior. In our sadness, we are shocked to discover that we are glad it’s all over.”
  11. Self-destructive thoughts and feelings—“One danger of being a suicide survivor is the possibility of falling into suicidal despair.”

In the chapter from Part II on remembrance, Al offers this helpful advice:

“Because of the corrosive, personality-altering nature of suicidal depression, ‘by the time suicide occurs, those who kill themselves may resemble only slightly children or spouses once greatly loved and enjoyed for their company.’ The days, weeks and years following a suicide may be a time of gradually recovering the memories of our loved one, of discovering true and lasting remembrances of their life.”

The chapter I have most marked up is the Why chapter. From our first conversation at 5:00 in the morning after Gabe died, Aaron Kheriaty gently but firmly instructed us that the suicide will never make sense. And yet we try …

Al writes, “We must make a distinction between causes and triggers. Suicide might be triggered by divorce or the loss of a job, but those may not be the actual causes … Suicidal desires run much deeper, and if one event does not trigger the suicide, another might.”

Nonetheless there are some defining characteristics:

  1. Medical and biological factors—“Studies show that about two-thirds of suicides had suffered from clinical depression or had a history of chronic mental illness.”
  2. Psychological factors—“Psychiatrist Karl Menninger suggested that suicides have three interrelated and unconscious dimensions: a wish to kill (the self), due to some degree of self-hatred; a wish to die, arising out of a sense of hopelessness; and a wish to be killed, coming from a sense of guilt. …  The agony of depression is so great that the suicide musters the resolve to do away with the pain, at the expense of his or her own life.”
  3. Sociological factors—“In the last quarter-century, society has tilted toward the individual rather than the communal … The glue that holds communities and families together is disappearing … [Suicide] rates among the young, more socially alienated generations have tripled … The more socially isolated we become, the higher our risk.”

Al mentions other factors like suicide as philosophical protest, the higher tendency toward depression/suicide in those with artistic temperaments, suicide because of grief (eg. 9/11 survivors) and suicide as atonement.

He says we may be asking the why question when what we really want to know is How could they do this to me?  For him, it is helpful to realize that his father “did what he did to end his pain, not to cause pain for me.” 

Each life and death is both common and unique. Dr. Walford’s experience with the temptation toward suicide sounds familiar and yet very different from Gabe’s. He communicated it in his chapel message through the lens of spiritual battle. That is one lens. The context of Gabriel’s death reads to me like a perfect storm of contributing factors. I see his suicide through a compound lens.

Walford chose a route to suicide that allowed him the opportunity to come to his senses. Gabe did not. Is one man more spiritual than the other because of method or outcome? I think not.

In Part III of Grieving a Suicide, Al talks about life after suicide. In the chapter on the healing community, he gives good advice on the language we use to describe suicide. Instead of saying someone “committed suicide” as if the victim were a criminal, we can say they died by suicide or they took their own life.

The final chapter offers five lessons we can learn from suicide:

  1. Suicide reminds us that we live in a fallen world.
  2. Suicide teaches us that life is uncertain.
  3. Suicide reminds us of our mortality.
  4. Suicide shows us the interconnectedness of humanity. Al was surprised to discover how well regarded his father was by his peers and what a profound impact his good gifts had on them. He and his family were comforted by the outpouring of support they received. We’ve had these experiences as well.
  5. Suicide demonstrates the necessity of hope. Amen and amen.

Our family has been mercifully spared much insensitivity and ignorance in the wake of this tragedy. I can’t imagine going through this without the wise counsel of those who’ve walked the road before. Grieving a Suicide is a book I don’t ever want to recommend again because doing so would mean someone else enduring this type of senseless tragedy. And yet, a suicide occurs every 17 minutes in the United States.

If you are a pastor or lay minister, prepare yourself with knowledge before you try to minister to the grieving and confused. This book will help you do that; it includes a helpful appendix of suicide prevention/survival resources. If you are a survivor, it will be a balm to your soul.

Thanks Al!

[photo ©cas 2007: sunrise at Mustard Seed Ranch, Warner Springs, CA]

Marathon Update

In the week after Gabe’s death, we were asked on several occasions if we really preferred a donation to the Children’s Tumor Foundation (CTF) to flowers. We said yes. I’d like to publicly thank the following parties for responding with generous donations:

Mr. and Mrs. Scott Friedman

The Long Branch High School Band Parents Association

Ms. Dorothy Hendricks

Ms. Janice Del Rossi

Mr. John Charles Allen

Mr. and Mrs. Ken VanWingerden

The Art VanWingerden family

Mr. Nathan Smith, Ms. Connie Smith, Joshua Smith and Danny Smith

Mr. and Mrs. Tony Butcher

Ms. Ruth Ann Allen

Alica and Don Bean

(If there are others, I’ll add their names as I am notified.)

5/2/08 Additions:

Ms. Anne Kohut

Mr. Jim Pickel

5/16/08:

Mr. and Mrs. William Job

Stephen, Gail, Tamara and Daniel Corti

5/27/08:

Margaret and John Lavaggi

6/6/08:

Linda and Frank Allen

David Fry

Bob and Karin Gaspartich

9/20/08

Berniece and Seongbin Pak

10/21/08

Mr. John V. Andres

Mr. D. Davis

Mr. and Mrs. Dennis Stitz

 

 

 

The Children’s Tumor Foundation was a godsend to me when Gabriel was diagnosed with neurofibromatosis (NF) at 6 months old. It provided information and hope that research was being conducted into this little-understood, but common disease. I had not kept up with the foundation’s work in the past 10 years because NF seemed not to be a big part of Gabe’s life. 

My interest in the work of CTF was rekindled this year by an encounter with an NF patient, by a minimal increase in Gabe’s symptoms and by a scientific discussion of an NF researcher’s stem cell findings. Gabe’s brother Mike and I decided to enter the Long Beach Marathon to raise money for CTF. (Mike will be a cyclist and I will walk/jog.)

Amongst the many questions we’ve asked ourselves in the past three weeks is what role NF played in Gabe’s depression. Yesterday, I did an internet search to see if any correlation exists between NF and mental illness. This possibility had never been mentioned by any physician or other resource I encountered.  Here is a summary of what I found:

“Many childhood psychiatric and behavioural disorders have

been associated with NF1. These include social problems, anxiety

and depression, social withdrawal, aggressiveness, obsessive

compulsiveness, and somatic complaints (Varnhagen et al.

1988, Spaepen et al. 1992, Johnson et al. 1999). Children with

NF1 are thought to be at special risk for attention-deficit–hyperactivity

disorder (ADHD; North 1997), with rates of at least 33%

being suggested (Kayl et al. 2000). Hyperactivity, reduced ability

to concentrate, and also sleep disturbances were the most

common problems reported by parents of children with

NF1 (Wadsby et al. 1989). Difficulties might be persistent, as

Samuelsson and Riccardi (1989) reported that 33% of adults

with NF1 experienced mental illness and that sleep disturbance

(‘reduced sleep’) featured prominently.”

Developmental Medicine & Child Neurology 2005, 47: 237–242 237

We believe many factors contributed to Gabe’s depression, and will never know for sure if NF was one of them. Nonetheless, Mike and I are entering the Long Beach Marathon with renewed motivation. Mike has already recruited some friends to ride with him and I’ve solicited my first sponsor. So, now you know why these donations to CTF mean so much to us and why Mike and I are pressing ahead with the marathon.

Sponsorship information will follow at a later date. If you don’t want to wait, you can make a donation in Gabe’s honor today.

Racing for Research

 

The scene above is a favorite one when I’m out walking. It will become much more familiar as I train for the Long Beach Marathon. I begin today with a moderate Run/Walk Plan. The race takes place on October 12, 2008. My goal is to raise $1000 for Neurofibromatosis (NF) research. More info and updates to come.

But first  …

Did you know that NF is more common than Cystic Fibrosis, inherited Muscular Dystrophy, Huntington’s Disease and Tay Sach’s combined? More than 100,000 Americans have NF, which is either inherited or the result of a genetic mutation. 

The gene that causes NF was identified in 1990 by Francis Collins’ team (before he was director of the National Human Genome Research Institute). Collins’ book The Language of God is being discussed in considerable depth on Scot McKnight’s Jesus Creed blog. To date, there are five six posts archived under the Theology category.

[photo ©cas 2008, Irvine, CA]

Clarification on hESCs

Now that I’ve had a moment to breathe (and get some laundry into the washing machine), I thought I should clarify a couple conclusions from my final post on stem cell research. When I stated that human embryonic stem cells (hESCs) are not likely to be the “great therapeutic hope they have been pumped up to be,” I was not expressing my own best judgment from the 10 day NIH training course. This statement was based on collective scientific opinions and on one opinion in particular. The source has been a strong proponent of hESC research and a significant player in the field. There may be other uses for hESCs, but this expert says the carcinogenic/immunological combination creates an “insurmountable” obstacle to therapy.

When I said that the best hope for therapies lies with induced pluripotent stem cells (iPSCs) that originate in one’s own body, it may have sounded simplistic. This statement, however, also emanated from both collective wisdom and the expressed opinion of a respected “off-the-record” source.

When I said that adult stem cells from donor sources pose significant risks, I did not mean to suggest they are not useful for therapy. They are. A family member has benefited from them. A friend suffered miserably from the graph vs. host disease that is sometimes a side effect of such treatment. She was desperately ill with the cancer that eventually killed her when she was injected with stem cells from cord blood.

Medical researchers talk in terms of risk/benefit analysis. Obviously someone dying of a deadly disease doesn’t have much to lose if hESC therapies prove to be carcinogenic or if adult source therapies require ongoing immunosuppression. The quadriplegic or diabetic does.

Finally, I should note (for what little credibility it provides) that I did significant course work in anatomy, biology and chemistry before I settled on journalism as a college major.