Archive for the ‘Crohn’s & Colitis Foundation of America’ Category

BWH/Harvard Northport IBD Study to begin next month

2016 BWH/Harvard Crohn’s & Ulcerative Colitis study to begin in November

In 2011  Dr. Josh Korzenik, The Director of the Crohn’s and Colitis Center at Brigham and Women’s Hospital (BWH), one of the leading IBD researchers in the country, and his team conducted a study of Northport residents through health questionnaires and medical record confirmations. He discovered a health cluster of Northport residents with either ulcerative colitis or Crohn’s disease that was 10 to 15 times higher than national standards. This was one of the largest health clusters of these illnesses he has ever seen.

The causes, and a cure, for ulcerative colitis and Crohn’s disease have long baffled the scientific community.  Northport’s historical exposure to specific heavy metal toxins may be a contributing factor to the abnormally high number of residents with ulcerative colitis and Crohn’s disease.

Dr. Korzenik is moving forward next month with a new epidemiological case-control study of Northport residents; focusing on a possible correlation to chronic exposure to heavy metals triggering ulcerative colitis and Crohn’s disease.

In March I asked for volunteers for this new study. Participants needed are residents diagnosed with either Crohn’s or Colitis, as well as residents who do not have either of these illnesses (a control group).  I received many volunteers to participate.  Thank you!   However, I do not want to miss anyone who may want to participate in this ground breaking study.

If you have not already contacted me* to volunteer and you are willing to participate in this study, both diagnosed residents and non diagnosed residents, please e-mail me as soon as possible.  The study begins in the next two weeks.  

Contact Info:  jamie_paparich@hotmail.com   or  northportproject@hotmail.com

* If you are not sure if you contacted me already please feel free to e-mail again!

The study is simple, and will take only a few minutes of your time.  You will be contacted by the research team, either by telephone or e-mail depending on your preference, to give your consent to participate in the study.  A questionnaire and a kit including scissors and nail clippers to obtain hair and nail samples will be sent to your home.  You will then send the packet back to the researchers, and the assays will be done at their lab.

Thank you so much to the community for your amazing support in volunteering for this much needed study!

 

Contact Info:  jamie_paparich@hotmail.com   or  northportproject@hotmail.com

Linking Air Pollution to Colitis & Crohn’s

Linking Air Pollution to Ulcerative Colitis and Crohn’s Disease;                      

A statement for Northport residents, epidemiologists, research organizations and universities on an opportunity for an epidemiological case-control study on Crohn’s and Ulcerative Colitis that continues to be ignored

By Jamie Paparich

Extensive studies continue to be done on human health issues linked to exposure to air pollution. It is well documented that exposure to air pollution has been a contributing factor in multiple forms of lung and heart diseases.

However, almost no studies have been done on the effects of air pollution on the gastrointestinal tract, specifically the intestines. Even though the bodies intestines absorb the majority of the toxins inhaled and ingested from air pollution.

Crohn’s Disease and Ulcerative Colitis are the two known inflammatory bowel diseases (IBD). Crohn’s disease can cause inflammation throughout the entire GI tract, anywhere from the mouth to the anus. It most commonly effects the small intestines, causing chronic inflammation of the lining of the small intestines.  Ulcerative colitis impacts the large intestine/colon.  Colitis causes inflammation and open sores, or ulcers on the lining of the large intestine/colon. Both Crohn’s and Colitis causes severe abdominal discomfort and frequent emptying of the colon. These diseases are incurable and impacts not only the patients long term health, but also their quality of life. The scientific and medical community have been unable to discover what causes these rare diseases, which limits the treatment options.

AIR POLLUTION

Depending on where you are, air pollution can contain anything from fire smoke, ash, emissions from smelters, mining operations, power plants, construction sites, road construction, and automobiles…just to name a few. All air pollution contains particulate matter (PM). Particulate matter is liquid and solid particles suspended in the air that contains a mixture of the toxic pollution, the dust and pollen in your air.  The particulate matter is how the toxins from pollution enter the body. 

Exposure

Inhalation & Dermal:

There are two sizes of particulate matter.

– PM 10:  10 microns (a millionth of a meter) in diameter or less. These are small enough to be inhaled and accumulate in the respiratory system. Many of the particles pass from the respiratory system through mucus down the GI Tract.

– PM 2.5:  2.5 microns in diameter (1/10,000 of an inch). These are so small they are inhaled into the respiratory system, but then are able to pass through the lungs into the bloodstream, and also from the respiratory tract through the GI Tract. These size particles can also be absorbed through the skin.

Ingestion:

The particulate matter falls onto gardens, crops, the food animals ingest, water sources, and the water ways fish inhabit. In turn, we ingest the PM through those products when consumed.

NORTHPORT AIR POLLUTION

In the case of Northport, air monitoring has shown that our air contains dangerous levels (way above safety standards) of arsenic and cadmium.  This is from the emissions released from the smoke stack at Teck Resource, a Canadian smelter located 3 miles upriver. The particulate matter in our pollution contains several heavy metals, not just arsenic and cadmium, because of the smelters emissions. 

BODIES REACTION

Gastrointestinal Tract

    • Inhalation:  Once particulate matter is inhaled into the respiratory tract, it is sent through the GI tract through mucocilliary clearance, eventually entering the intestines.  The majority of the  particulate matter inhaled into the body will end up in the intestines.  Not all of these toxins are expelled from the body. Many are absorbed and accumulate into the intestinal walls. This induces systemic effects; directly effecting the epithelial cells (the barrier between toxic invaders and healthy cells lining the intestine). System inflammation then triggers immune activation.  Over time, this leads to the immune system turning on the bodies good cells as well.
    • Ingestion:  Food and water containing PM toxins are ingested into the stomach, then passed to the intestines, where the toxins will, once again, spend the longest amount of time in the body, before being expelled from the body. The toxins not expelled will also inducing systemic effects, system inflammation, and eventually immune over stimulation.

IMMUNE SYSTEM & BIO-TOXICITY

Particulate matter alters the body’s immune system reaction. The immune system discovers and destroys disease causing organisms, viruses, and foreign agents in our bodies. The immune system kicks into overdrive due to the ingestion and inhalation of particulate matter, especially containing heavy metals. Eventually the chronic, overstimulation of the immune systems will cause chronic inflammation throughout the body, or to specific organs. 

Exposure to high levels of heavy metals is an obvious concern.  However, the more dangerous type of exposure is long term exposure, even to low levels.  This type of exposure causes the heavy metals to slowly accumulate in the bodies organs, causing biotoxic effects.  According to the research published in Heavy metal pollution and human biotoxic effects, (Duruibe, J. O. 1 *, Ogwuegbu, M. O. C. 2 and Egwurugwu, J. N. 3),  “….(G)eneral signs associated with biotoxicity of (sic) cadmium, lead, arsenic, mercury, zinc, copper and aluminum poisoning:  gastrointestinal (GI) disorders….”

INFLAMMATORY BOWEL DISEASE

In people with IBD, the immune system attacks the heavy metal toxins in the intestines.  Because of the accumulation of heavy metals toxins, from chronic exposure to specific air pollution, some individuals immune systems go haywire, attacking the toxins and healthy cells.  This eventually leads to chronic-inflammation, ulcerations, and thickening of the intestinal wall.  The result of this is Crohn’s disease or Ulcerative Colitis, and likely several other auto immune health issues.

However, not all people exposed to the same level of specific heavy metal toxins will develop Crohn’s or Colitis.  When the first cluster of Northport residents with either Ulcerative colitis or Crohn’s disease was discovered in 1992 statistically 1 in 100,000 people in the U.S. were diagnosed with one of these IBDs.  In 1992 Northport’s population was approximately 375 people, and 15 residents had been diagnosed with either Crohn’s or Colitis.  In 2012 a research team from Massachusetts General Hospital’s Crohn’s and Colitis Center conducted an IBD study of Northport and confirmed 17 people had either Crohn’s or Colitis, the population in 2012 was still around 375 people.  This is 11.5 to 15 times higher than the national standard. 

In 1992 and 2012’s study the residents diagnosed with either Crohn’s or Colitis lived within a two mile radius of each other, in the Columbia River Valley.  This valley was nicknamed “The Heavy Fallout Zone” by the EPA, due to the high levels of heavy metal toxins found in their sampling.  The levels were so elevated in this area because Teck’s air emissions, full of heavy metal toxins and sulfer dioxide, would flow north down the river and become trapped in the valley.  There is would settle, the particulate matter falling onto every surface below it, and being inhaled by the residents living on the little farms scattered along the banks of the river. These residents were chronically exposed to the dangerously high levels of arsenic and cadmium in the air for decades. 

However, the question still remains.  Why did some of these residents, living in the “heavy fallout zone”, contract Colitis or Crohn’s and some didn’t.  It impacted the children who grew up in the area the most, but not all of the children.  In the study; Exposure to ingested airborne pollutant particulate matter increases mucosal exposure to bacteria and induces early onset of inflammation in neonatal IL-10-deficient mice, (Salim SY1, Jovel J, Wine E, Kaplan GG, Vincent R, Thiesen A, Barkema HW, Madsen KL), the research team aimed to determine if exposure to particulate matter during the neonatal period and early-life would alter colitis in a mouse model.  The team concluded “Our data suggest that early exposure to pollution particulates can result in an earlier onset of intestinal disease in genetically susceptible hosts and can alter responses to gut injury in later life.”

Scientist have not been able to discover an inheritance/genetic pattern to IBDs.  Most scientists and researchers whose work is focused on Inflammatory Bowel Diseases and the GI Tract believe both genetic and environmental factors trigger the illnesses. 

Science Director of the Science and Environmental Health Network (SEHN) , Ted Schettler, M.D., M.P.H., shared his thoughts about the high occurrence of these diseases in our area; “If it is in anyway related to smelter emissions I’d wonder about changes in the intestinal micro biome as a plausible mechanism that could link metal exposure to inflammatory bowel disease.”

EPIDEMIOLOGY CASE-CONTROL STUDY

The community of Northport exceed all of the requirements to conduct an accurate epidemiological case-control study of the contribution chronic exposure to specific heavy metal toxins in air pollution has on triggering inflammatory bowel disease, as well as the impact it may specifically have on the immune system response.

The EPA is currently conducting a Human Health Risk Assessment of the area, as part of their agreement with Teck Resources in conducting remedial investigations and feasibility studies of the Upper Columbia River area and Northport. The EPA, nor Teck have any plans to monitor our air in any of the investigations or assessments.  The EPA has no interest in looking at the cluster of diagnosed cases of Crohn’s or Colitis in the area, spanning three generations. 

Today members of the community continue to be diagnosed with Crohn’s or Colitis, and more will continue to be diagnosed until something is done. 

NEW HARVARD CROHN’S/COLITIS STUDY- Volunteers Needed

New BWH/Harvard Crohn’s & Ulcerative Colitis study on Northport residents underway;    VOLUNTEERS NEEDED

 

In 2011 the results of a community lead health survey conducted in Northport, WA caught the attention of Dr. Josh Korzenik, the Director of the Crohn’s and Colitis Center at the Brigham and Women’s Hospital.  Through BWH, one of Harvard Medical School’s teaching hospital, his team conducted their own survey of current and former Northport residents to investigate the possibility of a health cluster of resident’s diagnosed with ulcerative colitis and Crohn’s disease.  Of the 119 participants, 17 had confirmed cases of either ulcerative colitis or Crohn’s disease.  According to Dr. Korzenik  “That’s about 10 to 15 times what we’d expect to see in a population the size of Northport.”  This confirmed his suspicion of a health cluster, (an unusually high occurrence of a disease or illness diagnosed in a group of people in close proximity of time and location.)

The causes, and a cure, for ulcerative colitis and Crohn’s disease have long baffled the scientific community.  Therefore, the discovery of this cluster could provide researchers and the medical community with an invaluable opportunity to better understand if environmental factors cause or trigger the diseases.

Northport’s historical exposure to specific heavy metal toxins, from the air emissions and solid discharges from a Canadian smelter located 3 miles up river, Teck Resources, may be a contributing factor to the abnormally high cases of of ulcerative colitis and Crohn’s disease diagnosed in residents.

Dr. Korzenik is moving forward with an epidemiological study of a correlation to chronic exposure to heavy metals and diagnosed cases of ulcerative colitis and Crohn’s disease.

Dr. Korzenik and his team are currently preparing their Institutional Review Board (IRB) to move forward with this study.   To conduct an accurate study he will need residents diagnosed with either ulcerative colitis or Crohn’s disease, as well as a control group of residents who do not have these illnesses.

The IRB process takes 1-2 months to complete.  In preparation for the study we are reaching out to the community to ask for volunteers to participate in this study.  Both impacted and non-impacted residents are needed.  The process to participate will be easy, a kit being sent to each participate, all of which can be done from home and sent back to Dr. Korzenik, free of charge.  The results of your participation will be invaluable, providing information that could lead to discovering the cause, and possibly even a cure, to these debilitating illnesses.

If you would be willing to participate in this study, or would like more information on it, please e-mail me at:  northportproject@hotmail.com

Lawsuit against Teck Smelter Dismissed

In 2008, along with the non-profit group Citizens for a Clean Columbia (CCC), I began reaching out to past and present residents of Northport, WA. After a year of researching the Environmental Protecton Agency (EPA), Dpt. Of Ecology, Dpt of Health (DOH), and the Agency for Toxic Sustaces and Disease Registry  (ATSDR) studies conducted in the Northport area, I discovered information so unthinkable I really didn’t believe it to be true at first. The studies of the U.S. Government Agencies, mentioned above, were of interest to me because they were in regards to the century of heavy metal toxins Teck Cominco had dumped into the Columbia River, and into our air. Teck Cominco, now Teck Resources, is a Canadian lead and zinc smelter located 7 miles from Northport, 3 miles upriver, in Trail, Bristish Columbia.  The slag and air emissions they had sent our way are the by-products of the process Teck uses to smelter the lead and zinc ores. They contain heavy metal toxins such as arsenic, cadmium, lead, mercury, and sulfur dioxide, just to name a few.

What I discovered in these US agency investigations and reports is that since before 1940 thru 1997 Teck Resources dumped an estimated 9.8 million tons of slag (heavy metal toxins) directly into the Columbia River. This is the equivalence of a dump truck emptying 19 tons, every hour, for 60 years. 19 tons of poison AN HOUR was dumped into the Columbia River, everyday, for 60 years.  The smelter found a free way to dispose of their waste and never so much as questioned the consequences their actions would have on the Columbia River, the environment, or on the health of the residents living in the small communities along the Columbia.

Do you know what else I discovered in the US Agencies investigations and reports? It was just as, if not more, alarming than what I discovered Teck had done. The EPA, Ecology, DOH, and ATSDR had discovered the accumulated toxins, and knew the danger they posed to residents in the area, as far back as the mid 1980’s. However, all their investigations concluded that more information would be needed for further research, And that the area posed an “intermediate health hazard”, but residents were “most likely” not in any immediate danger. Never once did any of the Government Agencies warn, or even tell, anyone living in Northport that they had been, and continued to be, chronically exposed to multiple heavy metal toxins, through multiple routes of exposure, for decades.

The DOH and the ATSDR did a human health assessment in 1994 on a small percentage of residents, because at a town meeting the community demanded they look into the health issues found in many of the residents. They took the blood of approx.. 22 children in Northport. They tested only for lead. They then spoke to the many residents suffering from Thuroid Diseases, Inflammatory Bowel Disease (Ulcerative Colitis/Chrone’s), Multiple Scoliosis, Parkinson’s Disease, Brain Tumors/Aneurisms, Brain, Stomach, Kidney, Pancreatic, Bladder, Breast, Eye Cancer and Leukemia. The ATSDR concluded that, although the amount of illnesses found was uncommonly high, further environmental investigations needed to be done by the EPA and Ecology before the DOH could proceed. Ecology completed four air monitoring phases by 1997, all four phases showed levels of cadmium to be higher than recommended safety levels, and arsenic was found to be 300 times higher than accepted safety levels.  The DOH did no follow up on this information.  And, again, residents were not even made aware of the results.

My Father grew up in Northport, along with his siblings and parents. They all suffer, or suffered, from one of the illnesses mentioned above.

The Government Agencies we count on to protect us, and defend us, let us down. They looked the other way for decades as Teck was allowed to dump 9.8 million tons of heavy metal toxins/poisons into our water, as well as the heavy metal toxins (arsenic, cadmium, sulphur dioxide) that they released into our air through their smoke stacks. Even worse, when they were backed into a corner to conduct studies on the impact the toxins had on our environment and health they looked away again. The people I have spoken to with specific knowledge on the subject believe the studies are designed to find in favor of the polluter.  Especially when the polluter is in another country and a fight would cause a cross border litigation, which could back fire on the United States.

Finally, in 2006, Two members of the Pakootas Colville Tribe sued the EPA for inaction. The court ordered, under CERCLA/Superfund Laws, the EPA to immediately begin a Remedial Investigation/Feasibility Study (RI/FS) and a Human Health Risk Assessment of the area. With, or without Teck Resources assistance.

They needed to be sued to be forced to do their jobs to protect us.  These studies are still not complete. How many lives could have been saved if they would have done their jobs correctly from the beginning?

Not enough, according to Teck. An internal memo circulated among Teck management in 1982 that stated that the amount of toxins being dumped daily into the river, and specifically the recent accidental release of 6,630 pds of Mercury into the river, might pose as an issue for Teck down the line if safer guidelines were not put in place.  The memo went on to say immediate action was not necessary because, currently the toxins were coming into contact with an “insignificant amount of people”.  The insignificant people they are referring to are the residents of Northport.

So, Teck felt that the town of Northport, with only 375 residents, was simply insignificant in the grand scheme of things.  375 fathers, mothers, grandparents, children, sisters, and brothers…they were just not significant enough. The friends and family I have lost to these diseases were significant, I promise you that. The friends and family I continue to see suffer with these diseases; giving them basically no quality of life, they are significant.

So this is what led me to reach out to the CCC in 2008.  Many of the resident who began this fight had passed away, or were still living with their debilitating illnesses, as they now watched their children and grandchildren being diagnosed with the same illnesses.  With the assistance of the CCC, and the participation of residents, I conducted a community health survey on three generations of past and present Northport residents. From 2008-2009 I collected 321 questionnaires. The results of the questionnaires showed that, over three generations, 54 respondents had Ulcerative Colitis or Crohn’s Disease (a very rare disease),  65 respondents had one of the cancers mentioned above,  23 respondents had brain aneurysms/tumors,  8 respondents had pulmonary embolism,  9 respondents had MS, and  13 respondents had Parkinson’s disease. These are just some of the health issues that were discovered. This may seem like a somewhat small amount. But in a population of 375 people these disease rates are all considered epidemiological health clusters by the scientific community. Meaning their exposure to some environmental factor(s) were most likely the trigger of these diseases, or at least played a significant role.

Since this health survey was done by residents, and not by the EPA, Ecology, DOH or the ATSDR, they had no interest in the results.

Luckily, the results of the survey caught the attention of Dr. Korzenik, a physician and researcher from the Massachusetts General Hospital (MGH). He agreed to bring his assistants up to Northport, and with the help of MGH, and Harvard University, he conducted his own study on his specialty, Ulcerative Colitis and Crohn’s Disease. It bares mentioning he has done countless of these studies over the years. After months and months of walking door to door, calling, and emailing residents to complete his survey, gathering medical history, and mapping out the findings, he was ready to publish his results. He discovered that the health cluster of residents with Ulcerative Colitis and Crohn’s Disease found in Northport, WA was one of the biggest he had ever seen. It was 11.5 to 15% higher than would be expected. He also believed this could be a once in a lifetime opportunity to study these diseases that currently have no cure, and are very rare and very misunderstood.

Dr. Korzenik and I shared the same hope. That once his study was published in a scientific journal we would get the attention needed to hold Teck responsible and use the suffering residents of Northport, who were more than willing, to take part in an epidemiological study on them and the area. Further studies could lead to information that could help cure, or at least prevent, people from getting Ulcerative Colitis and Crohn’s Disease in the future. We also hoped the study would attract the attention of specialists in Multiple Scoliosis, Parkinson’s, specific Cancers, etc. This little town, that had suffered over three generations was willing to let themselves be poked and prodded in the hopes to save future generations from suffering the pain and anguish they had lived with. They didn’t want money, they didn’t want the smelter to be shut down, they just wanted to help. And they wanted their Government Agencies to help them, in forcing the smelter to cut their toxic releases to the levels their permits allowed.

As Dr. Korzenik worked on his study, and was shopping it around for publication, an excellent law firm from Seattle contacted me. They wanted all my research and I happily sent it on to then, along with the smoking guns…the US Agencies own published reports.

The law firm believed that, along with the real evidence, provided by Teck because of the Freedom of Information Act, the US Agencies lack of investigating, and the results and publication of Dr. Korzenik’s study, these long-suffering residents had a real shot at bringing a civil lawsuit against the multi million dollar smelter. Most of the residents were not that interested in joining the class action suit. They believed that no amount of money would bring back their loved ones, or the years their poor health had stolen from them. Also, they told me again and again…”you don’t stand a chance.” They told me, Teck is a Canadian company the US does not want to get into a cross border litigation with, and their pockets are very deep. They had been fighting this fight for decades. Since the first Northport farmers sued Teck in 1933 for their air emissions killing their livestock and crops, to the groups of residents who continued the fight since. My Grandparents were a part of the CCC, and apart of that fight. My Grandpa succumbed to Leukemia and my Grandma passed away because of Parkinson’s.

But these excellent lawyers believed in the case. The lawyer’s initial filing was accepted by the Court. Teck, of course, filed for the case to be dismissed. The Judge denied their request to dismiss the case, and said they would stand trial. This finally happened in January of 2015. 7 years after I began this journey, and 101 years after the smelter began using the Columbia River as their personal toxic dumping ground, and sending their toxic air emissions down wind to settle into the Northport valley.

We were getting closer than we had ever gotten. However, in May of 2015 I received a call from our lawyer. Dr. Korzenik’s compelling, and undeniably groundbreaking research paper had been suddenly denied publication in any scientific journal. Without this study being published, by the scientific community, they could not go forward with the lawsuit. And although Dr. Korzenik is still actively trying to get the study acknowledged in the scientific community, the law firm had no choice but to withdrawal the civil suit and let Teck walk again. The lawyers themselves indicated to me that it was very probable Teck played a role in getting the planned publication of the study squashed.

So after all the work of countless people it seems Teck wins again, for now. I did reach out to Teck and asked, since they had openly admitted in court, that they did in fact pollute the river as was reported, if they would consider funding annual check-ups, blood tests, and hair samples to monitor the heavy metal build up in residents, and to provide proactive exams to detect the diseases found in the area in residents. They declined, probably because they still refuse to admit there is any connection between the toxins they admit to dumping by the truckload for over 100 years, and the health issues found in the residents of Northport. Did I mention all the illnesses found in clusters in the residents have all been scientifically linked to chronic exposure to the heavy metal toxins Teck has admitting been releasing for decades.

 

Please feel free to email me with any questions or ideas.

 

Thank you for taking the time to read this!

 

Jamie Paparich

paparichj@live.com

www.northportproject.com

If you or a family member suffers from Crohn’s or Colitis take a moment to complete an online survey that can provide info needed to find cures!

Your participation in an online research study
can help us find cures!

CCFA Partners has the unprecedented potential to improve the quality of life for patients everywhere. Join the 10,000 people who are already helping us build knowledge for a better future. All you need to do is fill out an online survey.

How does CCFA Partners work?
We want to enroll as many people with Crohn’s disease or ulcerative colitis from across the country as possible and hope that you will be among them. We will gather information about you and your experience with Crohn’s or colitis through a brief, confidential online survey. We will contact you by email every three months to let you know about our progress, and provide you with educational information about IBD and IBD therapies. Every six months we will ask you to update us about your condition in a brief follow-up survey. There is no cost involved. All data will be collected using a secure Internet server, so your personal information is safe and confidential. To start your survey, please click the special link at the end of this email.

If you decide to join CCFA Partners now, you can opt out at any time in the future.

We hope that you will participate fully — the more people who participate, the more reliable the research results will be! Thank you for your consideration.

If you are 18 or older and want to continue to the survey, please start your survey here.

Comments worth posting – a special thank you from The Northport Project to Shayla

Comment from Shayla Phillips:

I cannot thank you enough for writing this….I am in the eigth grade and I am doing a school project on Northport. There was so much info on Northport in this and I fully enjoyed reading. Im Stephanie and Levi’s younger daughter Shayla

Shayla 

_________________________________________________________________________________________________

Response submitted by The Northport Project  | In reply to Shayla.   

Hi Shayla –
Thank you for all the support you and your family have given me. It is actually because of you and your brother that The Northport Project even exists.

A few months after I began The Northport Project in 2008, I was so frustrated with the lies and misconceptions the DOH and EPA had told the kind people of Northport, along with the difficulty in getting past and present residents to fill out health questionnaires in order to move forward, I almost just gave up.

It was then that your Mom e-mailed me and told me of your brother’s diagnosis with Ulcerative Colitis and about your struggle with juvenile rheumatoid arthritis. That was the push I needed to not only keep going but to start pushing harder for the information the DOH and EPA were trying to avoid providing me and to push the past and present Northport residents to take the time to complete the questionnaires, necessary to get the information necessary to get epidemiological studies done in the area. Two years later we were able to get two physicians from the Crohn’s & Colitis Center at Massachusetts General Hospital to conduct the first phase of their epidemiological study of Northport residents, past and present, diagnosed with Ulcerative Colitis and Crohn’s disease. The Northport IBD Study, (designed specifically for Northport), just concluded phase I of this study, in which the physicians were able to conclude that there is a health cluster of these diseases currently in the community, and that there has been a consistent cluster of these diseases since approx. 1955-60. With this information they are currently preparing an abstract, which will be used to obtain grants and funding for phase II, and eventually a manuscript of their findings. The results of this study could very likely help in discovering the cause, or specific triggers, of Ulcerative Colitis and Crohn’s disease, still unknown to the medical and scientific community.

So it is you I should be thanking. It is because of your Mom and her description of the suffering both you and your brother have endured so courageously. As well as your parents unselfishness to contact me to contribute whatever information they could in order to ensure this did not happen to any other children. They were not looking to blame anyone, or for compensation for the pain and suffering your family had endured (although they have every right to!), they honestly just wanted to help.

So thank you sweetie – and please feel free to e-mail me anytime – jamie_paparich@hotmail.com

Sincerely,
Jamie Paparich

CCFA – Patient Participation for Research Registry

http://www.ccfa.org/trials/studies/CCFAPartners

 

 

The Crohn’s & Colitis Foundation of America is in the process of developing CCFA Partners, a new program aimed at enlisting patient and family participation in activities to further increase our understanding of Inflammatory  Bowel Diseases (IBD). Specifically, CCFA is assessing the feasibility of building a long term patient registry to support IBD research.

CCFA sponsors many targeted research projects on an ongoing basis and one of the challenges is identifying IBD patients who are eligible to participate in clinical studies. By establishing a registry of patients from across North America, we can broaden participation and inform patients who are members of the registry of upcoming projects which may be of interest to them.  Increased patient involvement can lead to more rapid research progress by shortening the time required to compile sufficient research data to complete the project(s).

At this time, we are investigating the feasibility of establishing such a patient registry by soliciting opinions and recommendations about how to organize the registry from a small, randomly chosen number of patients and/or their family members, and/or other CCFA members and supporters. You may be contacted by email or by direct mail in the near future and asked to complete a brief online survey by our Data Center at the School of Medicine of the University of North Carolina at Chapel Hill. These email survey invitations are sent from pasp_cgibd@med.unc.edu and they contain a direct link to the survey in the body of the email. We hope you will support this most important initiative.

If you have questions, please contact us at: info@ccfa.org

The investigators of CCFA Partners are:
Lloyd Mayer, MD
Chair, National Scientific Advisory Committee

Bruce Sands, MD, MS
Chair, Clinical Research Alliance

James D. Lewis, MD, MSCE
Vice-Chair, Clinical Research Alliance
Chair-Elect, National Scientific Advisory Committee

Sunanda Kane, MD
Chair, Patient Education Committee

Updated: 6/3/10

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