Bipartisan Legislation to Help Diagnose and Treat Genetic Disorders Like Cancer and RARE Diseases, Particularly in Children

Here is some possibly very good news on the forefront.

Today,Representatives Eric Swalwell (D-CA), Scott Peters (D-CA), and Tom Emmer (R-MN) introduced bipartisan legislation to better diagnose and treat genetic disorders like cancer and rare diseases, particularly in children. This legislation was included in Representatives DeGette and Upton’s CURES 2.0, legislation that was introduced today, which would improve how drug treatments and therapies are delivered to patients. Bipartisan legislation will help diagnose and treat genetic disorders like cancer and RARE diseases, particularly in children. This is extremely good news being that nearly 80% of rare diseases are genetic and 70% begin in childhood. 

“This much-needed legislation will help provide hope and relief to millions of children living with a mysterious and rare disease,” said Rep. Eric Swalwell.”

Although a significant number of rare diseases are genetic, they have a varied etiology:  infectious, autoimmune, nutritional, and environmental diseases and cancers. Regardless of etiology, living with a rare disease can have a detrimental effect on mental well-being. While this could be said of any disease or chronic condition, the mental impact can be amplified in the case of rare diseases. Anxiety, stress, low mood, emotional exhaustion, and suicidal thoughts, have all been identified in the rare disease population.

“Genetic and genomic testing technology is improving every day, and this bill provides a critical step forward for making these tests more accessible to pediatric patients.”“Genetic and genomic testing options are the future of medicine. Offering this service will help us understand the individual needs of patients and ensure we can provide answers for millions of families with children struggling with unknown illnesses. Making these tests more accessible will save lives, revolutionize our health care industry, and ease the burden on our system through prevention instead of treatment,” said Rep. Tom Emmer.

What Motivates You?

Enough is enough. Enough has cost people their livelihoods, their family relationships, and in many cases, their very own lives.
What is it going to take to get people to wake up?   More suicides?  More mental disabilities resulting in our government spending more and more for work loss productivity?  More over-crowding of prisons?  More homelessness?  More substance abuse? More physical conditions – such as heart disease, obesity, asthma – where stress can be a contributing factor?

The list goes on and on, yet our funding for research into mental health diseases and suicide continues to lag way behind that of other diseases and conditions. My question has been, Why?  Also, why do so many people seem to be hesitant about finding the biological factors involved in mental health disease, in particular, the genetic component? 

Many of us still want to bury our heads in the sand, as if to say, “Oh,  my family doesn’t have any mental health issues.  And I certainly don’t.”  Well, in many of these cases, this is simply not the truth. So why wouldn’t we want to find the answers?

It occurred to me one day that while the stigma attached to mental health conditions is a reason, it’s not the only one.
Don’t get me wrong.  Stigma is a huge problem. 

However, another motivator occurred to me; one that is far more powerful than even stigma. 
This is fear.  Fear that when/if we find that biological reasons (including genetics) are indeed a major component of our mental health disorders, we’ll have to admit that we, our loved ones, and most of all, our children may be genetically predisposed.  This is frightening.  It’s much easier to tell ourselves that mental health disorders are not really brain diseases, but disorders based on only environmental causes.  We have a recipe for dealing with this – our current medications and therapies.  This recipe is far from perfect, but a recipe nonetheless.

I’ll have to admit that it is pretty scary, being that we don’t have all of the answers at this time to treat these diseases.  However, with our current research, we are in far better shape than we were even five years ago. And through research, we are getting closer to finding the answers to genetic predispositions and, in turn, finding effective treatments and cures.

Instead of being frightened of how genetics plays into the mental health equation, I think we should welcome it with open arms. This takes courage.

Just imagine if we could have blood tests to determine the predisposition of mental health conditions. We could target them at an early age and treat them before they are able to advance to serious levels. And while continuing our research for possible cures, we could educate those who are predisposed to these conditions in effective coping strategies. This knowledge is empowering. This knowledge gives hope.

We can’t go back and change the precious time that has been lost for this much needed research, but we can do something now.  Please join forces with our group to advocate for funding into genetic research, and to finally end this war on mental health disease.  We, and our loved ones, are worth it.

*** Please use our ‘Contact’ form to get in touch with us to join our movement in whatever capacity you are able.
Also, we need your input. ***

*** Please look at the ‘What You Can Do’ tab for a sample letter to write to your legislators. ***

So, what motivates You? We need your input. Together, we can help to end the war on mental health disease!

Researchers Discover Genetic Risk Factors for Childhood OCD

Obsessive-Compulsive Disorder (OCD) is a well-known mental health condition, but for many years it has been one that’s easily misunderstood. This is partly due to the way it is often portrayed in media and partly due to a lack of knowledge. Fortunately, we now understand that OCD is an actual mental disorder. However, much is still unknown as to its causes. Over the years, blame has been placed on environmental factors such as stress and parenting styles. But no research has ever shown that stress or the way a person interacted with his or her parents during childhood causes OCD.  Stress can, however, be a factor in triggering OCD in someone who is predisposed to it, and OCD symptoms can worsen in times of severe stress.

In speaking of this predisposition, researchers have recently discovered genetic risk factors for OCD that could help pave the way for earlier diagnosis and improved treatment for children and youth. Dr. Paul Arnold, professor and director of The Mathison Centre for Mental Health Research & Education at the Cumming School of Medicine in Toronto, stated the following:

Our group made the first finding of a genome-wide significant risk gene relevant to childhood OCD. We’ve known that OCD runs in families, but we hadn’t identified and validated specific genetic risks of OCD symptoms in children and youth until now.”

After looking across millions of genetic variants from the saliva samples, the team identified that children and youth with a genetic variant in the gene PTPRD had a greater risk for more obsessive-compulsive traits. The findings are published in Translational Psychiatry.

Dr. Christie Burton, PhD, lead author and research associate in the Neurosciences & Mental Health program at SickKids (partnering in this study), stated that discovering the genes involved in OCD is critical to help improve patients’ lives. “This type of research is still in the early stages, but the hope is these findings will lead us to understand the causes of OCD, which in turn could help identify people with OCD sooner and develop better treatments.”

Included in this article is an account of a young man, going by the name of Sam. Sam has OCD, and seems to be doing well with his current therapy and medication. However, our current treatments don’t have the same effects on all patients with OCD. In fact, few patients experience complete remission of symptoms despite available treatments. There is an urgent need for conceptually novel pharmacological strategies to improve treatment outcomes for those patients who demonstrate only a partial response to therapy or prove to be highly treatment resistant.

In speaking about Sam, he is 17 years old, and lives with OCD. With therapy and medication, he says he has been able to face his obsessions and compulsions, ride out the anxiety and control his actions. Looking back at his childhood, Sam says he had some OCD tendencies as early as elementary school, but neither he nor his family realized he had a mental health condition. The researchers hope that by understanding the genetics of OCD they can develop better treatments, improve outcomes and diagnose young people like Sam earlier.

In Sam’s words, “At first I wasn’t sure what to do with the diagnosis, it was very foreign, I didn’t want to perceive myself as having a mental health issue. But, knowing I have OCD helped me overcome the challenges. With therapy and medication, I’ve stopped OCD from overtaking my life and taken back control.”

Sam is a real teenager, but Sam isn’t his real name. He says due to the stigma around OCD he would prefer to remain anonymous.

I find this real story of a young man living with OCD to be very revealing in regard to the state of affairs of our mental health crisis as it speaks to a major roadblock; stigma. Sam is helping by offering his story, but still feels he needs to remain anonymous. This is a major roadblock. If the public was made aware of the the genetic role involved in OCD and other mental health diseases, more people may willingly come forward to tell their stories without feeling ashamed and stigmatized Why? Because mental health conditions would be treated as brain diseases, which they are, and not personality weaknesses or character flaws. And, in response, the fight for genetic research would be strengthened. Then, we can really make changes to help those suffering.,are%20published%20in%20Translational%20Psychiatry

Connection Between Major Depressive Disorder, Anxiety, and Obsessive-Compulsive Disorder

For decades, research scientists have been attempting to tackle a fundamental question. “What are the roots of mental illness?” Throughout their search for finding an answer, they have collected a vast amount of data through genetic studies, brain activity and neuroanatomy. They have also researched the subject of comorbidity in mental health conditions.  Simply put, this is when there is more than one mental health condition or disorder occurring simultaneously in the same person.

Comorbidity within mental disorders is common.  For instance, if a person is diagnosed with both Social Anxiety Disorder and Major Depressive Disorder,  they are said to have co-existing, or comorbid, anxiety and depressive disorders.

A large, cross-sectional, national epidemiological study of comorbid conditions in mental health in Spain showed that among a sample of 7936 adult patients, about half had more than one psychiatric disorder.4 In addition, looking at the U.S. National Comorbidity Survey, 51% of patients with a diagnosis of major depression also had at least one anxiety disorder. Only 26% of them had no other mental health condition.

The following blog is in regard to three disorders that are now among the most studied in mental health.  They are anxiety, depression, and OCD (obsessive-compulsive disorder).  Before understanding how OCD, anxiety, and depression interact, we need to look at each.  Throughout the blog, when looking at causation, please notice the amount of times you see the word ‘genetic’ appear.

Major Depressive Disorder:

The American Psychiatric Association defines depression (Major Depressive Disorder, MDD) as a mood disorder that causes a substantial decrease in well-being, in regard to several different areas of life.

On an emotional level, depression brings feelings of sadness, loneliness, emptiness, a lack of pleasure or energy, and hopelessness.

On a cognitive level, depression causes detrimental beliefs that bad (negative) experiences are the person’s own fault, and that the world around them is a lonely, scary place, where things will never improve.

On an interpersonal level, depression is marked by actions and responses to others that destabilize their relationships and create problems between the person suffering from depression and those around them.

It can severely hinder their sense of self-worth, place in society, and day-to-day functioning.

Depression Demographics:   

Depression is a prevalent mental health disorder, affecting about one in 15 adults (or 6.7%) of the adult population. In the US, 17.3 million adults (7.1%) have reportedly experienced one or more depressive episodes during their lifetime.

Several risk factors have been shown to increase the chance of developing MDD. These include genetics, childhood environment, personality and temperament, later life events, and the existence of additional mental and physical disorders.


Anxiety is defined as an extreme, adverse and disproportionate concern over a possible threat. Unlike fear, which is seen as an intensely unpleasant emotion in response to perceiving or recognizing a danger or threat, anxiety is characterized by excessive uneasiness and apprehension, typically with either compulsive behavior or panic attacks.

Anxiety is a family of disorders, with a large number of individuals facing them. In the United States 19.1% of the population are diagnosed with at least one anxiety disorder, with 31.1% of US adults having dealt with an anxiety disorder sometime during their life. 

Both anxiety and depression have been associated with experiencing distress when facing the unknown, with depression related to a vague sense of mourning, and anxiety growing out of the thought of a future threat whose likelihood remains unclear.

While depression is defined by a lack of energy, anxiety is perceived as more of a system overload, and tied to excessive concern over the possibility of coming to harm.

Within the anxiety family, there are the following disorders:

  • Generalized anxiety disorder: Excessive worry over one or more major life domains (work, home, family, etc.).
  • Separation anxiety disorder: Increased distress over separating from an attachment figure (excluding relevant childhood developmental stages).
  • Panic disorder: Severe and unexpected attacks of distress, eventually fearing the onset of the next attack.
  • Social anxiety disorder: Distress over social situations that may involve scrutiny.
  • Specific phobia: Fearing certain stimuli, objects, or scenarios.
  • Selective mutism: Inability to speak in public.
  • Agoraphobia: Fear of open or enclosed spaces, using public transport, being in a crowd or outside and alone during specific situations.
  • Substance/medication-induced anxiety disorder: Symptoms of anxiety developed following use of medication or substance abuse.

Causes of Anxiety Disorder:

  • Genetics.
  • Brain chemistry.
  • Environmental stress.
  • Drug withdrawal or misuse.
  • Medical conditions.

Obsessive-Compulsive Disorder:

Obsessive-compulsive disorder, or OCD, is a mental disorder defined as a combination of anxiety-inducing mental processes and physical actions. OCD can be very time-consuming, creating significant distress, and impairing function in major life areas.

OCD is an overactive defense mechanism that repeatedly introduces anxiety into the individual’s mental health system. It consists of intrusive, obsessive thoughts that the person has very little or no control over, and then, compulsive behaviors that a person feels driven to perform in response to an obsession. Fulfilling the compulsive behaviors usually reduces a person’s distress related to an obsession.

Obsessive Thoughts: OCD-related thoughts tend to focus on one or more themes that cause the individual extreme distress. Such thoughts are intrusive, unwanted, and tend to repeat themselves in a ruminative fashion.

Compulsive Behavior: Individuals battling OCD often feel as if they are assaulted by their own mind, due to their adverse, repetitive thought patterns. As a result, many develop rituals of repeated behavior in an effort to suppress their feeling of anxiety they experience. However, while these behaviors can temporarily bring about relief, they eventually become compulsive, and in the long run, contribute to the individual’s rising levels of stress.

OCD Demographics:

2.3% of US adults and 1%-2.3% of US children and adolescents face OCD. While this disorder can start at any age, OCD symptoms usually appear between the age of ten and early adulthood. It is very hard to diagnose OCD, and is often explained away as a person’s little ‘quirks’ or peculiar behaviors.

OCD has been linked to a number of risk factors. These include genetics, environmental factors, temperament, and life events.

A Range of OCD-Related Disorders

OCD is part of a range of what is referred to in the DSM-V as OCD-related disorders. The conditions in this group involve obsessive thought patterns and unwanted actions or ceremonies meant to alleviate feelings of anxiety. They include hoarding, trichotillomania (hair-pulling), excoriation (skin picking), hoarding, and body dysmorphic disorder (a preoccupation with a perceived physical defect).  It’s important to understand the person suffering from OCD is very aware that their behaviors are not rational, but are unable to stop obsessive thoughts due to the feeling of a possible catastrophe or impending doom. 

How MDD, OCD, and Anxiety Relate to One Another:

Each of these conditions has a connection with the other two conditions ; however, in slightly different ways.

Linking OCD and Anxiety

Connecting OCD and anxiety is straightforward because anxiety is the central symptom of OCD.  It’s also the reason why OCD was, at one time, considered part of the anxiety family of disorders.

However, several crucial developments in the field of OCD research have shown that OCD needs to be separated into its own category.

One reason is that scientific discoveries have now been able to actually map out the neural pathways and structures that play a part in the development OCD.

Second, therapists in the field have noticed that specific treatments, such as cognitive-behavioral therapy, are able to offer individuals with OCD some benefit with .

Third, OCD-focused genetic research has uncovered genetic commonalities for OCD and OCD-related disorders, separating them further from other anxiety-based disorders.

How OCD and Anxiety Relate to Depression

Linking OCD to anxiety disorders is understandable because they stem from the same core symptom – anxiety. But how do either anxiety or OCD relate to depression?

One rather intuitive link between both of these anxiety-centered categories and depression is based on causation.  An individual who suffers from either OCD or anxiety may find themselves feeling hopeless, saddened or unable to enjoy life—all symptoms of depression. Facing either of these disorders for long can eventually cause them to develop depression as well.

Second, all three disorder families often appear together. Depression, anxiety, and OCD all show a high level of comorbidity with one another, with the probability of developing two or more of them together being significantly higher than chance.

Unfortunately for those facing several of these conditions at once, comorbidity decreases the chances of a symptom-free recovery when compared to those battling singular disorders.

Last, Genetics seem to shape the relationship between these three conditions. The connection appears to pass through neuroticism, which is a trait causing negative emotions. Having this personality trait may cause a person to have intense, adverse reactions to internal and external stressors, resulting in feelings of sadness, guilt and anger. Since neuroticism has been found to be both highly hereditary and a risk factor for anxiety, depression, and OCD, researchers of this characteristic have hypothesized that it acts as a mediator between all three of these conditions. 

Finally, neural structures also appear to play a part in the co-morbid development of anxiety, OCD and depression. Specifically, the amygdala portion of the brain, and its role in processing emotions, has been shown to be associated with the development of these three disorders. Damage to the amygdala has been shown to affect how we process and perceive threatening stimuli and expressions of happiness, which can result in the appearance of depression, anxiety and OCD-related symptoms. 

In conclusion, with the advent of current genetic research, we are finding studies showing that genetics and epigenetics play a role in the development of depression, anxiety, and OCD, and that there are links between each.

Other serious mental health conditions are also showing findings of a genetic role, as well as having over-lapping links to other mental health conditions.

As always, for our loved ones, we need to support mental health genetic research so we can help to end the suffering for so many.  It’s way past time for action.

Familial Risk and Heritability of Diagnosed Borderline Personality Disorder

Borderline Personality Disorder is something I began reading about decades ago when working on my counseling degree. Unfortunately, there was no real scientific research on BPD at the time.  Everything I read in the DSM about the possible causes of BPD was based on the belief that those who suffered with BPD had caregivers who abandoned, abused, or neglected them in some way during childhood. 

Now, decades later, genetic research has come into play, and has given us some promising data that there is a genetic component to Borderline Personality Disorder.  Other research has suggested that there is a neurological basis for some of the symptoms, that brain chemicals helping regulate mood may not function properly in individuals diagnosed with BPD. Environmental factors, such as traumatic life events – physical or sexual abuse during childhood, neglect, and separation from parents—are at increased risk of developing BPD.

For those who may not have heard of Borderline Personality Disorder, it is a mental health disorder that impacts the way you think and feel about yourself and others, causing problems functioning in everyday life. It includes self-image issues, difficulty managing emotions and behavior, and a pattern of unstable relationships. A person with BPD may have an intense fear of abandonment or instability, and may have difficulty tolerating being alone. However, inappropriate anger, impulsiveness and frequent mood swings may push others away, even though those with the disorder want to have loving and lasting relationships.

A clinical trial, published in June, 2019 (issued in March, 2021), gives us the first ‘total-population’ study of familial aggregation (occurrence of a trait shared by family members) and heritability of clinically diagnosed BPD. The study followed 1,851,755 individuals born between 1973–1993, in linked Swedish national registries.

This study concluded that the familial aggregation and heritability of Borderline Personality Disorder was estimated at 46%, with the remaining variance explained by non-shared environmental factors. Further studies are necessary in order to learn more about genetic factors and BPD. The time is ripe for identifying genetic variants associated with BPD through large scale genome-wide studies.  This will aide in helping to identify environmental risk factors, and how these may correlate or interact to increase the risk of BPD.

Latest Research Strengthens Link Between Genetics and Suicidal Behaviors

This latest research shows that suicide isn’t caused by one single factor or event. Several things have been pointed out in our current prevention strategies, but not until recently have we been exploring the genetic and epigenetic factors behind it.

The following is current research on the link between genetics and suicide. Many will recoil because they will feel guilty. I would say, “Why? Your genes are not your fault.” I would continue to say, “What IS shameful is to bury your head in the sand and pretend that mental health has nothing to do with genes.”

The only way we can combat any aggressive disease is to do research to find the causes, and once we have done this, to search for effective treatments and CURES. (like we have done for Cancer and so many other diseases) We must do the same for diseases of the mind. Please read the following eye-opening research.

What Can My Genes Tell Me About My Mental Health?

Mental health disorders are conditions that affect how a person thinks, feels, and acts. Our group refers to these conditions as brain diseases. They can impact a person’s life in significant ways, including how they cope with life events, earn a living, and relate to other people.

A burning question for patients and families is “Why did this happen?” This is a very common question for those suffering from a psychotic episode, a suicide attempt, or a diagnosis of a mental disorder. It’s an extremely prevalent question for those who have lost someone dear to suicide.

Research conducted and funded by the National institute of Mental Health (NIMH) has found that many mental disorders (brain diseases) are caused by a combination of biological, environmental, psychological, and ‘genetic’ factors. In fact, a growing body of research has found that specific genes and gene variations are associated with mental disorders.

With this information, it seems obvious that we need far more genetic research into the causes of mental health conditions so we may help the many people who are suffering from these debilitating, and many times, fatal diseases. Where is the outcry for those who have died due to suicide and those who are at risk for suicide?

Please help us to push for a change – not only to remove stigma, but to put our money where our mouth is. That is to carry out research for the causes of these crippling diseases. Do your part. Contact your local legislators. And please visit us at Walt’s Waltz.

We all need your voices for change!

Change the Definition of Suicide

It’s been bothering me for a while that the definition of suicide assumes what’s in the minds of those who complete suicide. How can we possibly know what someone else is or was thinking? We can’t.

However, the NIH states: “Suicide is when people harm themselves with the goal of ending their life, and they die as a result.”

Do you see the error? We can not possibly know what someone’s actual goal is at the point of suicide. Many do not leave a note, so how can we say they wanted to die? For those who do leave a note, we can’t know the pain they are experiencing. From the research we now have, the vast majority of those who die by suicide do not want to die. They want to end their pain, and they see no other way out. They are suffering at the hands of a vicious invisible disease that’s as real as any cancer, heart disease, and all other ‘physical’ diseases. Many are going through a severe mental crisis and may not even realize what they are doing. So how can we talk about their goal ???

The definition would be far more accurate by saying,

“Suicide is the act or instance of taking one’s own life”. (Period)

Group – Cure Brain Disease

Facebook Members – We have begun a group titled Cure Brain Disease – Research for Mental Health Conditions , and would like for anyone who is interested in exploring ways to further research into these brain conditions to please request to join. It’s far past time for us to advocate for change. Where is the Outcry to finding effective treatments and cures for these debilitating brain diseases? We must push forward with a War on Mental Health Disease! The only way to do this is through scientific research.

Just Imagine

What if our minds were treated with the same respect as our bodies? Like the “War on Cancer” 50 years ago, just imagine if we would have had a “War on Mental Health Conditions and Suicide” …..

War on Cancer, 1971

“This year marks the 50th anniversary of the December 1971 signing of the National Cancer Act, which led to the establishment of the National Cancer Program and significantly expanded the authorities and responsibilities of the National Cancer Institute (NCI).

Federal funding for cancer research has led to significant advances in cancer prevention, detection, diagnosis, treatment, and quality of life for patients, leading to a record 16.9 million survivors of cancer alive in the United States today.”

Now, read this again and each time you see the word “Cancer“, replace it with the words “Mental Health Conditions and Suicide”. Cancer research is undoubtedly important. So is research for conditions of our minds – our brains. If we had treated our mental well-being with the same respect as cancer, just imagine the different world we would be living in today.