Turning Love Into Power II

February 19, 2012

We are now a week out from our second fundraiser and still experiencing the warmth and afterglow of 375 individuals coming together to raise awareness and funds for rasmussen’s encephalitis.  The evening was special in so many ways and its success was due to the hard work of many people.  We were fortunate to have Dr. Frances Jensen, Boston Children’s Hospital and President of the American Epilepsy Society attend the event and give a terrific presentation that energized the room and explained why it so important to support the mission of the RE Children’s Project.  To see pictures of the event please click here.

Dr. Frances Jensen, Scientific Advisory Board Member, addresses the room.

We were also fortunate to have Joe Voros, the RE Children’s Research Coordinator attend the event as well.  Joe’s role is critical to the success of our research mission to advance our understanding of RE.  As our research coordinator Joe will be facilitating increased collaboration amongst the top epilepsy and RE research centers.  It is our view that the traditional rules that govern medical research are slowing advances in rare disease.  The RE Children’s Project supports a research approach that accelerates advances by funding institutions that are willing to share their research and increase their productive output by leveraging each others skill sets and technological advantages.  In today’s world of scarce resources and diminished budgets this approach provides key advantages.

Last week I also had the opportunity to be in Los Angeles and I met with Dr. Carol Kruse of UCLA.  Dr Kruse along with her colleagues at UCLA are on the leading edge of rasmussen’s research.  Last year we funded UCLA and although we are in the early innings, Dr. Kruse relayed that their initial research is yielding useful information.  UCLA is in need of the blood of pre-hemispherectomy, RE patients.  This week we were in contact with a doctor in Australia who attended our Deer Valley Conference who let us know that he is currently treating an RE patient interested in donating blood.  This is a first step, but the shipment and transfer of human tissue in the US is governed by a complex set of regulations that are known as IRBs.  The IRB process is complex and this is another area where Joe’s work is essential to accelerating research.

In just over 2 years with your support we have made significant strides, but we are still early on in this journey and there is a lot of hard work ahead in our against the odds fight against RE.  Realistically there is only one calling card in the medical research community and that is money, please continue to donate, every penny counts.  Thank you.

Flanked by the brain trust, Dr. Jensen and Joe Voros.

Co-chairs Laura Maier, Susan Ballard, Tammy Taylor, and Susan Graham

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Blog takes a break.

February 11, 2012

Football team preparing for the Lifting Grace Event on March 9th

Grace attends the 8th grade dance where "Gracelets" were on sale

Calm before the storm, silent auction table at the fundraiser.

Darien football team in the weight room prepares for "Lifting Grace" competition.

Dr. Frances Jensen, guest speaker at fundraiser, Scientific Advisory Board.

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Viral causes of Rasmussen’s

February 5, 2012

We had a research conference call this week with Dr. Charles Chiu, University of California, San Francisco.  Dr. Chiu is a recipient of a research grant from the RE Children’s Project and is an infectious disease expert.  He is the Director of UCSF’s Viral Diagnostic and Discovery Center.  We are extremely fortunate to have Dr. Chiu focused on RE and we can thank Dr. Christian Bien, a member of our scientific advisory board for Dr. Chiu’s interest.  As we have written in the past, there is a debate among RE researchers as to RE’s cause and we funded Dr. Chiu to determine if RE is caused by a virus.

Dr. Chiu is currently analyzing the brain tissue of RE Patients that was removed during surgical hemispherectomys.  There are about 30 samples from two hospitals, one located in Germany, the other in the US.  The technology used to analyze the tissue is known as the Viro-Chip,– a glass slide with specks of DNA from every known virus that is then placed  in a microarray.  A microarray, more commonly known as a DNA chip, is a laboratory on a chip where simultaneous and high speed analysis is conducted on the chip. Dr. Chiu’s lab extracts DNA and RNA from the brain tissue which is then sequenced against all of the known viruses, over 22,000 that reside on the chip, to see if there is a match.  The Viro-Chip was invented by Dr. Joseph Derisi and has greatly accelerated the ability of scientists to diagnose viral infections.

We wrote a few weeks ago that encephalitis involved brain inflammation typically caused by a virus.  The cause of rasmussen’s encephalitis however, is not known and there are no known risk factors which predispose an individual to develop the condition.  We learned on the call that after sequencing about half of the samples there has not been a Eureka moment, that is, so far the lab has not been able to identify a viral cause of RE.  Bad news is still news and if we learn that RE is not caused by a virus, it will be a major step forward.  We will learn more in the coming months and will keep you posted.

Due to the incredible support we receive from our community and friends, we are about to sell out our second fundraiser this coming weekend.  There will be over 350 people attending Turning Love Into Power II, our fundraiser event to raise awareness and funds for RE.  I cannot thank the four women who are organizing this year’s event, Susan Ballard, Laura Maier, Tammy Taylor, and Susan Graham enough for their hard work and dedication.  Thank you to all of you that have donated.

Grace and friends prepare cards for the fundraiser.

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Rare disease research

January 29, 2012

In the past week or so I have watched two interesting shows that raise questions about the process by which drugs are approved for marketing in this country.  The first program was an Outside The Lines program on ESPN that addresses the use of stem cell therapy by elite athletes to recover from injuries.  The second was a documentary, Burzynski, that follows a researcher’s 15 year battle with the government to use gene-based therapies to treat incurable cancer.  There are groups and individuals on both sides of these controversies, but what is so striking is how in both cases the success of individuals using the therapies are ignored and written off as random, despite overwhelming evidence.  Additionally, both shows speak to how the game is rigged to benefit large pharmaceutical companies, and in this era of crony capitalism it makes one wonder about the prospects for really advancing research into rare diseases such as rasmussen’s encephalitis.

Towards the end of last year the following bill was introduced in the House of Representatives.

H.R. 3699 – On December 16, 2011, Representatives Darrell Issa (R-CA) and Carolyn Maloney (D-NY) introduced H.R. 3699, the Research Works Act, which would prohibit any Federal agency, including NIH, from requiring that investigators make any research paper arising from research funds publicly accessible via the Internet without the prior consent of the publisher. The bill would also prevent government agencies from including in its grant and contract agreements a prospective requirement that the results of the research be made publicly available on the Internet. The bill would effectively prevent NIH from posting peer-reviewed papers arising from NIH funds to PubMed Central as required by Division G, Title II, Section 218 of P.L. 110-161.

The last line states that the results of government funded research would no longer be allowed to be published on the internet.  Whatever the issues are behind this bill, it’s result is anti-rare disease, anti-research, and creates poor transparency in the research process.  We need to pay attention more attention to these issues as path-breaking research will migrate off-shore.  Already today, individuals with resources are importing drugs not available in the US to treat epileptic conditions.  This is one reason why one of our first research fundings was to a group outside of the US in Germany, and two of our scientific advisors are located overseas.

I came across a really cool website this week sponsored by the Khan Academy.  I mentioned it on our facebook page. The educational videos on this site are addicting and there is something for everybody.  Watch this one and learn about B lymphocytes!  This site is perfect for Grace as it addresses math problems.  Staying on the educational front I watched another interesting video posted by friends at the Brain Recovery Project that addresses teaching math without words.  This is just plain brilliant.  The rewiring of the brain post-hemispherectomy is absolutely critical and digital versus analog teaching methods facilitate this process.

Our fundraiser is two weeks away.  It is the only fundraiser we do all year and last year it raised the bulk of our research expenses.  Please help us in our mission to advance research into rasmussen’s encephalitis and let us know you share our passion to help families avoid the despair we went through.  Please hit the donate button, every dollar counts.  Thank you.

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Good Deeds/Great People

January 22, 2012

The momentum is building for our February 11th fundraiser.  Click here to view an invitation. For more details about ticket prices please contact, swohlberg@rechildrens.com. The evening will be a celebration of spirit and courage to raise awareness and funds for rasmussen’s encephalitis.  We are expecting a sell-out so please RSVP.  Tickets can be paid for through the website by hitting the donate button.  We are fortunate to have two members of our Scientific Advisory Board. Dr. Frances Jensen, Boston Children’s Hospital and Dr. Carlos Pardo, Johns Hopkins Hospital attending the event, and Dr. Jensen will be speaking as well.  We have created a follow-up to our most viewed video, “Grace’ Story” which will be shown that evening and we will post the video on the website in a few weeks.

We are frequently asked by people how they can help.  Although I never say it, the best answer really is to make a donation.  I know that this is not always possible, but many individuals find special ways to let us know they care.  Here are a few examples.

Recently a friend’s father past away.  I was unaware of the situation, but a day after the passing he contacted me and said he was directing individuals to make contributions to the RE Children’s Project.  That blew me away, an unbelievable act of selflessness and really touched me.  One person in Chicago sent us $2,500 in memory of my friend’s father.   Wow!  Thanks Michael for your kindness.

Another friend is a chef who owns a liquor store.  Last year at our fundraiser he donated as a silent auction item a cocktail party consisting of several food and wine pairings.  We were fortunate to be invited to the party recently and there was Joe preparing several tasty dishes all in the name of the RE Children’s Project.  Thanks Joe.

Another upcoming event is the 8th grade, Valentine’s Day’s Dance sponsored by the Darien Youth Commission. The Youth Director has rallied the kids to sell Grace bracelets the evening of the dance with all proceeds going to the RE Children’s Project.  This is really special when the kids get involved. Thanks Alicia.

These kind acts in which people find creative ways to increase awareness and raise funds are so special and meaningful, and inspire us to continue forward in our efforts to advance medical research into rasmussen’s.  Thank you.

On the research front, Joe Voros, our newly minted Research Coordinator had a meeting this week with individuals at the National Institutes of Health.  Since our formation we have been working to build solid relationships with the NIH.  UCLA has already sent one proposal to the NIH for funding which was declined, but we remain committed to the process and anticipate several proposals flowing into the NIH that seek to build on our early round fundings of rasmussen’s research.

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Headaches (Again)

January 17, 2012

We were bummed out this week as Graces headaches returned.  It has been about 5 weeks since her last bout of headaches.  These headaches are in the front of her head and at times accompanied by throat sensations. These headaches debilitate Grace and they do not respond to Advil or traditional headache remedies.  They cause Grace to lose her zest to do anything and weigh on all of us.  We remain hopeful that as we approach the second anniversary of her last surgery that these headaches will resolve themselves and she will be able to have longer and longer stretches headache free.

We are busy on a number of fronts.  Mr. Joe Voros, our Research Coordinator, is now hired and working out of Johns Hopkins.  Please feel free to outreach to Joe, he is 100% committed to the cause and a super individual.  Joe’s e-mail address is joevoros@gmail.com.  Joe’s initial task will be cataloging all of the RE tissue at UCLA, Boston’s Children’s and Johns Hopkins, as well as other surgical and research institutions.  He will also be helping out in a number of other important areas that will assist in raising awareness for RE.

We are only weeks away from our February fundraiser and the momentum is building toward a great event.   The organizing committee consists of four talented women, Susan Ballard, Tammy Taylor, Laura Maier, and Susan Graham, all of whom leave no detail unattended and are going the extra distance to make sure the evening is a first class event.  Please, please, please make a donation even if you cannot attend to let us know that you recognize our hard work and the impact we have had during our two years of existence.  If you are planning to attend please RSVP today as we are expecting the evening to be a sellout.

Later in the week we will be formally announcing the formation of our Scientific Advisory Board.  Another important milestone for the RE Children’s Project.  Finally, please note February 29th in your calendar and let people know it is Rare Disease Day.  Find a way to recognize the $30 million people in the US being impacted by a rare disease.  Thanks.

Having fun in the Bahamas.

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Rasmussen’s 101

January 7, 2012

Ever since we learned that Grace had rasmussen’s encephalitis, we focused on rasmussen’s as a seizure disorder, which it is, an epilepsy.  The disease is named after Theodore Rasmussen, a famed neurosurgeon who championed the hemispherectomy as the only treatment that could arrest the intractable seizures that characterize the disease.

More recently I have been posting on Encephalitis Global, a global community devoted to support individuals impacted by encephalitis.  Encephalitis is defined as an acute swelling of the brain, most often due to an infectious agent.  Encephalitis is serious business, especially meningoencephalitis.  There are also auto-immune encephalitises.  I have found a few rasmussen’s families on the site as well as a receptive group of individuals interested in our bout with an encephalitis.

On some of encephalitis websites rasmussen’s is characterized as an auto-immune encephalitis, this is most likely due to the chronic inflammation that is characteristic of the RE infected brain tissue.  The actual etiology of RE is a hot topic of debate amongst the researchers as the pendulum is now swinging towards a viral agent as the cause rather than an auto-immune process.  Regardless of the trigger, there is no doubt that once initiated, the body’s immune system for some unknown reason attacks the brain tissue.

Swelling is a symptom of inflammation.  Inflammation is a biological response, a defense system against harmful and injurious agents that initiates the healing process.  In RE, this healing process runs amok causing chronic inflammation that leads to atrophy and epilepsy.  The research projects we have funded to date are focusing on both the infectious and auto-immune causes of RE, as well as the possible genetic predisposition for an individual to develop RE.

RE has a foot in two separate patient groups, epilepsy and encephalitis.  This week I heard from an individual who was struck down by meningoencephalitis, now recovered, but looking to make an impact on research that can advance our understanding of encephalitis.  I will share more about his efforts in the future.

We are delighted to have Joe Voros joining our efforts as our Research Coordinator.  For more on Joe as well as the Research Consortium please refer to our blog dated January 4th, 2012.  We have expanded our social media presence.  We are now on Linked-In and you can sign up to receive both our weekly blog as well as our periodic Insider Newsletter directly into your in-box.  Finally, anticipation is building for the February 11th fundraiser.  If you are interested in attending please let me know.  The evening will be special.  If you cannot attend please join us in spirit and hit the donate button.

Grace turns 14 this week. Happy Birthday Grace!

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RE Children’s Project Appoints Research Coordinator

January 4, 2012

RE Children’s Project Appoints Research Coordinator to Facilitate Research into Rare Childhood Disease of RE

Removing Half the Brain is Only Treatment for Neurological Disease That Strikes Otherwise Healthy Children

  • January 3, 2012

The RE Children’s Project and the RE Children’s Research Consortium is pleased to announce the recent hiring of Joseph Voros as Research Coordinator for the RE Children’s Research Consortium.  Voros will facilitate the Research Consortium’s collaborative research between Children’s Hospital Boston, Mattel’s Children’s Hospital UCLA, and Johns Hopkins University School of Medicine, led by Drs. Frances Jensen, Gary Mathern, and Carlos A. Pardo, respectively.  Voros will be based at Johns Hopkins University School of Medicine, under the direction of Dr. Carlos A. Pardo, associate professor of neurology and pathology at the Johns Hopkins Hospital Department of Neurology.

Joseph Voros comes to the Consortium with experience in the field of public health, working as an independent contractor in Washington, D.C., and Haiti.  A recent Master of Public Health graduate from George Washington University, Voros is also the recipient of the White House President’s Volunteer Service Award, a Merit Scholarship recipient at George Washington University, a Gold Medal Research Award recipient, as well as a National Institute of Health representative.

“Joe Voros will be responsible for building out the Research Consortium, cataloging tissue samples, identifying patient registries, among other duties,” noted Seth Wohlberg, founder of the RE Children’s Project who is funding the RE Children’s Research Consortium.  “The RE Children’s Research Consortium is the first of its kind that encourages research institutions and hospitals to work collaboratively to create a virtual repository for clinical information, brain tissue, biological samples (e.g., blood cells, plasma/serum or cerebrospinal fluid), that can then be compared and generally available to others in the Consortium.”

The goal of the RE Children’s Research Consortium is to make clinical information as well as brain tissues and biological samples more available for research purposes directed towards RE.  Another objective is to expand the Consortium and enlist all research organizations, both US-based and global, to focus on research studies to find the cause of RE and design potential treatment approaches. The Consortium will provide resources and help to coordinate such research efforts by coordinating the use of RE related clinical information, tissues and biological samples or advanced diagnostic testing capabilities and facilities.

“We see the RE Children’s Research Consortium as a way for researchers and physicians throughout the world to share knowledge, resources and breakthroughs with the main goal to identify the cause of RE and focusing on potential treatments,” noted Dr. Carlos A. Pardo, associate professor of neurology and pathology at the Johns Hopkins Hospital Department of Neurology, who will oversee the virtual biorepository and coordination effort at Johns Hopkins.

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New Year

January 1, 2012

We are entering the third year of our journey as we strive to increase the awareness of rasmussen’s encephalitis for the primary purpose of raising funds to advance research for a cure.  We are committed to our mission and maintain our belief that the incidence of a disease does not belie the scientific and societal good that comes about from finding its cure. Unfortunately, the invisible hand that guides capitalism as well as the pharmaceutical/biotech companies does not find its way to support research for rare diseases thus leaving this task to patient advocate groups such as the RE Children’s Project as well as other motivated parents.

We have accomplished quite a bit in our short time of existence funding several innovative projects and helping rasmussen’s families all over the world.  We are not resting on our achievements and seeking to accelerate our activity as the foundation and infra-structure we have set in place will provide a fulcrum for increased activities. This is of course predicated on our ability to continue to raise money, the essential lifeblood of our efforts that allows to maintain and attract the attention of the research and clinical communities.

In the beginning of the year, we will formally announce the hiring of our research coordinator and the appointment of our scientific board.  The research coordinator is an especially important move for us as we seek to increase the collaborative research among the global players in rasmussen’s.  In February we will be holding our fundraiser in Darien, CT.  During the first half we will also be reporting to you on the results of some of the research we previously funded.  We will also be considering new projects to fund as well as re-upping our commitment to our existing projects.  On the horizon will be the planning for our third research symposium that will take place next year.

Thanks again to all of you out there that have supported our efforts.  We encourage you to outreach to us and let us know what is going on in your life or how we can be of assistance.  I also would like to send my love and best wishes to all of my fellow warriors who are looking to change the world that include my friends at the Hemispherectomy Foundation, CURE, ICE Epilepsy, Hope for Hypothalmic Harmartomas, Brain Recovery Project, and the Epilepsy Therapy Project, as well as the other important member organizations of Vision 20/20.

We are blessed to have so many people care about our family and keep Grace in their prayers.  Thank you.  We look forward to helping others as they struggle through their own personal roller coaster rides with rasmussen’s.

Michael and Grace share a laugh.

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Year-end

December 26, 2011

Deb and I would like to express our heart-felt thanks to all of you that have made our life a bit easier the last few years and to our supporters that have stepped forward to join in our mission to find a cure for rasmussen’s encephalitis.  This journey has had its ups and down and many bittersweet, difficult moments, but we have also been blessed along the way to meet so many wonderful and caring people.

Grace’s first seizure was in June 2008 and now over three years later we are beginning to develop a  sense of normalcy in our lives following two dramatic brain surgeries.  Our lives have changed forever, but we are hopeful that we are in some kind of new normal that will be marked by positive developments as opposed to the waterfall of despair we suffered through in 2009 and 2010.

That said, we will not and cannot forget the utter hopelessness we lived through as we discovered the nightmare of rasmussen’s encephalitis; this is what fuels our passion to find a cure.  Please stay tuned in the New Year as we continue our against the odds battle to advance medical research into rasmussen’s.  With your support we have already moved mountains and we are no less ambitious as we consider our plans for next year.

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