Friday, May 20, 2022

2008 Boston Road Rally & Party

April 3, 2008 by  
Filed under Boston Road Rally

Some very dear friends of Addi and Cassi’s in the Boston area have volunteered to host a fun Road Rally and Party to benefit The Addi and Cassi Fund.
WHEN: May 18, 2008 @ 2:30pm
WHERE:  Starting in Lynnfield MA (suburb north of Boston)
TICKETS: Purchase your tickets online Here

About the Road Rally We’ve designed a fun and challenging road rally that starts in Lynnfield and ends in Andover. We will give you clues to help you navigate through beautiful New England roads and answer questions along the way—kind of like a scavenger hunt. There will be a party at the end of the route where you can share your experiences with your fellow rallyers. If you choose not to enter the rally, you can still join us for the awards party at the end.
Charitable Contribution We are suggesting a minimum charitable contribution of $100 per car, or $50 per person for the awards party, with all proceeds going directly to the APMRF – Addi and Cassi Fund. This fund is 100% directed by the Hempel Family with input from the Scientific Advisory Board at the Parseghian Foundation.  The focus is to provide incremental funding to existing research efforts and to fund accelerated research in NPC and test emerging and experimental therapies that can have very near term impact to saving Addi and Cassi and other NP-C children. Map of Start and End Locations: View Larger Map Please plan to arrive at the starting location (3 Glen Dr Lynnfield, MA) by 2:30pm. We’ll have a short drivers meeting, and the first car will leave at 3pm. Cars will leave at 1-minute intervals thereafter.
Rain Date:
Since we moved the date to Sunday so that The Hempel’s can join us we are going to have this event rain or shine!
Your Hosts:
Stephen and Andrea Gondert Joe and Susyn Lichtenberg Bob McGill

 

Dementia In 4 Year Olds. Think about it.

April 2, 2008 by  
Filed under Alzheimers

Human-Brain-Color

Saving Our Brains

We’re 4 year old identical twins, Addi and Cassi Hempel.  We recently went on a trip to Detroit to Children’s Hospital Michigan with our Mom, Aunt and Grandma to have PET scans done on our brains. We are suffering from a rare and progressive neurological disease called Niemann Pick Type C. If we don’t do something about it, we’re going to lose our minds.

Our PET scans revealed that just like some Alzheimer’s patients, we have a glucose metabolism problem in the frontal lobes of our brains. This causes dementia. One of us (Cassi) has an inflammation spot in the middle of our brain, in the parietal lobe and basal ganglia area. This is an area of the brain where Parkinson’s patients are often impacted.

We ask that you take a moment to learn more about us and our fight against NPC. We have posted our brain videos, report and scans for the world to see.  We hope that through a view into our brains, we can bring answers and treatments not only for ourselves but for others who suffer from neurological conditions of all types.

Watch our Brain Video

Read our Brain Report

Look At Our PET Scans
Glucose FDG Addi
Glucose FDG Cassi
PK Addi
PK Cassi

Rooms/Lodging For May 10th Gala

April 2, 2008 by  
Filed under Lodging/Rooms


circuslogo

A block of rooms is reserved at a discounted rate at Circus Circus Hotel for our event.  Circus Circus is attached to The Eldorado and The Silver Legacy via indoor bridges.  These three hotels form a “complex” that is directly next door to the event site (new downtown Reno Ballroom) .  Circus Circus is currently offering rooms for Saturday Night ONLY (many hotels are require a 2 night minimum).

The discounted rates are:

North Tower Standards

$95.00

Sky Tower Standards

$85.00

NOTE: You can upgrade your room to a mini-suite for an additional $30/night on a first come first serve basis.

Please tell reservations that you are calling about group code: “IADDI”.  If they can not find the group code please let them know that you are part of the “Addi and Cassi Hempel Fund” Gala on May 10th.

Reservations
1-800-648-5010
Circus Circus Website


We recommend the following excellent alternative hotels in Reno:

Silver Legacy
Reservations
1-800-687-8733

Eldorado Hotel

Reservations
1-800-879-8879

Re-Thinking Drug Development Roadmap In United States

March 21, 2008 by  
Filed under Health Care Policy, Virtual BioTechs

National-Chemical-Genomics-

No Insurance. No Money. No Drugs. No Hope.

We Need A New RoadMap For The Future

Of 7,000+ diseases that affect humankind, treatments for only 200 of these diseases are being actively pursued by pharmaceutical and biotechnology companies. With the cost of bringing a new drug to market now exceeding $1 billion dollars and taking up to 10+ years to test and develop, global pharmaceutical companies are focused on return on investment.

Meanwhile, millions of people suffering from all types of diseases will never see new drugs reach them or their loved ones in their lifetime. As a nation, we must unite to think about the drug development process in a different way and push for change.

Today, one family is faced with paying $180,000 a year for a highly experimental drug treatment for their two children afflicted with Niemann Pick Type C. Who can afford a single experimental drug at this price?  Like millions of others, many Niemann Pick Type C children have no health insurance.  No insurance. No money.  No drugs.  No hope.

The dire situation we are faced with our drug development process is happening across disease states — this is not a unique problem to Niemann Pick Type C. The FDA is in a major crisis and we can no longer continue on this path when millions of lives are at stake. The Addi and Cassi Fund, named in honor of our five year old identical twin girls, plans to bring attention to the drug development crisis and to push for change.

We are building one of the first “Virtual Pharmaceutical” models in the United States with the help of Silicon Valley heathcare company CollabRx. Our Virtual Pharmaceutical is named "SOAR-NPC" (Support Of Accelerated Reserach for Niemann Pick Type C) and we are focused on creating a drug therapy pipeline for NPC afflicted children around the world. If global pharmaceutical companies and the FDA won’t help us save our children by rapidly bringing new drugs to market, we must find solutions ourselves in order to attack and treat a rare and fatal disease like NPC.

One of the greatest resources we have as a nation is our National Chemical Genomics Center. The robotic technology at the NCGC which is pictured above should continue to be invested in by our government — NCGCs technology can find existing drugs sitting on shelves that can be repurposed and used to treat diseases they were not originally intended for. Currently, we are funding the NGCG to test thousands of approved drugs as well as natural supplements against multiple Niemann Pick Type C cell lines in the hopes of finding immediate targets to treat afflicted children.

Every dollar donated to The Addi and Cassi Fund goes directly to cutting edge research projects to rapidly accelerating finding immediate treatments for brain diseases. Translational research – studies that bridge the gap between the discoveries in the laboratory with the need to find ways to intervene in the disease process and treat patients who are living with illnesses – is the roadmap for the future. With your help, we can build this roadmap and prove there are alternative approaches to the current drug development process.

We must seek treatments today and cures tomorrow!

A Boy With A Very Big Heart

March 18, 2008 by  
Filed under Get Involved

I was laying in bed the other afternoon after staying up all night emailing scientists the results of Addi and Cassi’s brain scans when the doorbell rang.  It was Christopher Serio with an envelope in hand.  Chris is 11 years old and is the son of our friend and former neighbor, Bob.   “Here, this is for Addi and Cassi,” he says and proceeds to hand me an envelope decorated with a red heart, a sunshine and pine trees.   “I just counted up all my savings from when I was little.  I have $653 dollars and I want to give Cassi and Addi $150 dollars of my savings for research into Niemann Pick Type C.” I open the envelope and it’s full of cash.  I almost burst into tears but I somehow hold it together and give him a great big hug.   I think about how generous this young man is.  It turns out that this is an entire year of his allowance.   Would anyone else we know give us an entire year of their savings to help with research?  I am so inspired by Chris and his generosity.   As I watch him walk down the driveway and get into his Dad’s truck, I hold out hope that Addi and Cassi will someday be competing for his attention.  A lovely young man with a very big heart.  That’s Christopher Serio.

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