November 25, 2016

Every penny helps, but take advantage of making an end of the year donation...

October 1, 2016

This is Vicky, she had HSCT three years ago in Russia, a hematopoietic stem cell transplant, The video made me cry just to see her progress, her defeating this disease, the reason I am fundraising!

kickinms.com

September 29, 2016

Update...

1,000 donations of $43.11 will reach the H.S.C.T. goal, Please share and stop multiple sclerosis in it's tracks!

September 29, 2016

1,000 donors with $43.54 each... it's getting closer...

September 29, 2016

September 21, 2016

The September 24th golf tournament is cancelled.

August 21, 2016

Golf tournament fundraiser, includes breakfast and lunch! If you don't play golf tell people you know about it, register by September 16th!

Silent auction, raffles and prizes...

Also looking for hole sponsors, promote your business!

Go to the Golf Tournament link below.

August 9, 2016

Figured out I have been seeing the wrong dr. all along?

It is very uncommon to find a neurologist that supports HSCT as a treatment for autoimmune neurological disorders (such as MS and CIDP, etc.). Neurologists know a whole lot about nerves but usually know quite little about the actual underlying pathogenesis of autoimmune diseases which reside in the immune system. Because neurologists are typically not educated, not trained and not experienced in HSCT and why it is the most effective medical intervention so far discovered for hematologically-rooted autoimmune disorders, it is human nature that someone ignorant on the subject will not support something they don't understand. I like to use the analogy that you wouldn't choose a house painter to fix your car engine because it is a complete mismatch of skills, so why would you choose a neurologist to consult about your immune system? (A hematologist is the right specialty.) For treatment of these disease types, seems like the only skill most neurologists have is to prescribe a lifetime of drugs that have no hope of halting the underlying autoimmune disease the way HSCT can.

July 28, 2016

Looking for businesses to sponsor 1 of 18 holes in the golf tournament, promote your business.

Information in the golf tournament below.

July 28, 2016

Some things you CAN try at home.

MS Symptoms

What You Can do To Understand

Painful Heavy Legs+ Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?

Painful Feet Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

Loss of Feeling in Hands and/or Arms Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

Loss of Feeling in Feet and/or Legs, Ask a doc for a shot of Novocain in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.

TN (Trigeminal Neuralgia) Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

Uncontrollable Itching, Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

Tingling, Stick your finger in an electrical socket - preferably wet.

Tight Banded Feeling Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?

Shots, (that I don't have to take anymore because they have a little capsule I take that has a brain disease for one of the side effects)

Trouble Lifting Arms, Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

Spasticity Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

Poor Hearing/Buzzing in Ears, Put a bee in each ear and then put a plug in each one so that the bee stays put...bzzz

Balance and Walking Problems, Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

Urgently Needing to Pee, We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

Bizarre and Inexplicable Sensations, Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.

Pins and Needles Stab yourself repeatedly with needles all over your body or better yet....Get a very large tattoo in your most sensative area.

Dizziness (Vertigo) Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.

Fatigue Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.

Cognitive Function (Brain Fog), Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

Bowel Problems, Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard un-cushioned chair and stay there till tears appeared.

Burning Feeling, Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.

Intention Tremor, Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte's), Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

Vision Problems (Optic Neuritis), Smear Vaseline on glasses and then wear them to read the newspaper.

Memory Issues, Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

Foot Drop Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.

Think about this every night wondering whether something on your body won't work the next day when you wake up.

Swallowing, Try swallowing the hottest chili pepper you can find.

Heat Intolerance or Feeling Hot When it's Really Not, You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms -

welcome to our world. Thank goodness I don't have all these symptoms...

It only progresses, help me stop it, 1,000 donations of $44.00

I post it this way because it shows this is achievable...

July 16, 2016

Saving a life... This is multiple sclerosis.

vimeo.com

July 10, 2016

Stem cell transplants, using patients own stem cells from their blood helps many autoimmune diseases.

A Silent Epidemic

Autoimmune diseases (AI) cause significant and chronic morbidity and disability. Consider this quote in the publication, The Scientist (Volume 17, Issue 9, Page 30, and Date: 5/5/2003). "These disorders affect an estimated 5% to 8% of the US population (or currently, 16 to 27 million people)." Thousands of people are newly diagnosed every month. The loss in productivity to our nation's economy (not to mention the loss of income to families) due to disabilities associated with these diseases is almost incalculable. There is currently no cure for these diseases.

The generally accepted standard of care (immune-modulation treatments) do not halt the disease progression. Most treatments are strictly for symptomatic relief, or an attempt to slow the progression. To complicate matters, those with one of these diseases have varying rates of progression. Some people are relatively asymptomatic throughout their lifetimes, while others suffer rapid symptomatic progression (like an Open-ended Bell Curve). Most people with these diseases gradually become more symptomatic, progressing towards greater pain, suffering and disability.

In many of these autoimmune diseases, halting further progression will literally save their lives. The improvements in the Quality of Life for all patients offer hope for a brighter, more productive future. With an impressive success rate, these HSCT procedures are the only truly viable options currently available for many thousands of people with autoimmune diseases.

The Immune Renewal Foundation embraces medical processes that are patient centric; that are not Drug-Centered. Procedures that utilize established, yet refined, medical technologies to Reboot the Immune System; thus halting further progression of autoimmune diseases. These procedures are called "Autologous Haematopoietic Stem Cell Transplant with High-dose chemotherapy, aka HSCT".

As of 2013, these procedures have rarely been employed for the treatment of autoimmune diseases. Yet the efficacy of these procedures have been proven in Clinical Trials. For whatever reason, these procedures are not widely known in the medical community for the treatment of autoimmune diseases. Only a very small fraction of sufferers know that these "Procedures" exist or that they might be a treatment option. The Immune Renewal Foundation's Mission is to spread awareness of the existence of these HSCT procedures to as many sufferers of autoimmune diseases as possible.

From, www.the-irf.org

June 14, 2016

Dr. Richard Burt at The Vatican.

June 11, 2016

everyone got a $2.00 discount!

1,000 donors with $44.89 will reach our goal!

May 20, 2016

$46.00, only $46.00, so simple, yet so hard to get there, 1,000 donations of $46.00 to reach our goal. My multiple sclerosis will no longer progress and I will no longer have to take the medication that only slows the inevitable of getting worse.

Getting worse is no longer being able to walk, no more driving, did I say one of the side effects of one of the medications is a brain disease?

A Multiple sclerosis reality walk is in the works... When people say, "you don't look like you have m.s." I'd like to know what it looks like

May 5, 2016

Promising...

www.patientsforstemcells.org

April 26, 2016

About $47,000.00 to go! Try to be one of the thousand and donate $47.00!

April 21, 2016

Hematopoietic Stem Cell Transplant (HSCT) Explained.

April 13, 2016

People disabled with MS should have the same rights to healthcare treatment as people disabled with Cancer.

Please reconsider the lack of logic or reasoning behind HSCT being considered a novel treatment for patients with MS, when the risk is the same as cancer patients; and there are now many countries that consider this mainstream treatment for people with MS should they chose this treatment. We are simply falling behind USA, Europe, and parts of Asia. Neither does it make economic sense when healthcare is soaring, to not get MS patients into remission, to put the brakes on future costs, as this is a relentlessly degenerating disease.

To date, no drugs stop MS. MS drugs only reduce exacerbations by 30-40%, leaving people with MS not only dealing with an ongoing degenerative disease but also with the MS drug’s side effects. Though many of the side effects are simply very uncomfortable, there is a significant noted amount of varying side effects that are mortal. These include Progressive Multifocal Leukoencephalopathy (PML), liver failure, kidney failure, and even some forms of cancers.

If MS is not halted, approximately 80% of people with MS will end up permanently disabled and on disability. (MS Society of Canada fig)

However, there is an off-label use for Chemotherapy. By using one’s own bone marrow transplant (own adult stem cells) it now has less than a 1% mortality rate. This is a commonly recognized and allowed treatment for patients with leukemia, having been regularly performed since the 1960s on patients up to the age of 65. The safety of this procedure has been highly improved, safer, over the decades. This treatment STOPS disease progression for many people with autoimmune disease, especially MS. It was, in fact, discovered when some patients who had cancer and who also had an autoimmune disease, found that their autoimmune disease disappeared after their cancer treatment.

In Canada, we have had only very small drug trials using this procedure on a very small segment of people. It is called HSCT, Hematopoietic Stem Cell Transplantation. It should be not listed as experimental treatment as it is definitely not new technology and has already been used on some patients for decades. (We currently have no clinical trials for HSCT {need the chemo part} . The last one in Ottawa, Dr. Freedman only had the more extreme ablative form of HSCT when non-ablative is extremely safe and efficacy is in the 90% ile. Another issue is, the trials only had a narrow age limit when cancer patients can readily get this treatment up to age 65). www.youtube.com originally reporting successes.

Yet - www.youtube.com moved on to pharma again, without going into any depth with non-ablative HSCT. We have no non-ablative MS trials in Canada at the current time either.

In the United States, however, after President Obama's executive order 13505, which was basically “Removing Barriers to Responsible Scientific Research Involving Adult Human Stem Cells”, there are now large phase 3 national drug trials, at Northwestern University in Chicago. This treatment has results and puts patients with MS into remission, stopping 91% of the disease from proceeding further, with the remaining 9% having their disease so slowed that it is many years before they need to depend on drugs again. (US is farther ahead of with this but still needs to be an FDA approved treatment before everyone with MS would be entitled to this treatment).

www.youtube.com University of Chicago.

Even the US National Library of Medicine, National Institute of Health recognizes this treatment: www.ncbi.nlm.nih.gov

However No action creates an unfair two-tier health care system: Only the well to do, or people with private insurance for pharmaceuticals or critical health that will foot the bill, can and do get this treatment out of country. To date, there has been over 2000 people treated for MS in these facilities: www.hsctstopsms.com It is mainstream recognized treatment in Russia. Recently there has been more open larger trials with a European Stem Cell Alliance, (European Group for Blood and Marrow Transplantation) where only their country member citizens can get this treatment. www.ebmt.org

It is already now recognized by many States in the USA:

www.facebook.com

- In 2008 to 2014, partial list only, of 63 insurance companies in the US paid for this treatment. Please note that this is not a complete list, but the following companies have provided Hematopoietic Stem Cell Transplantation (HSCT) for Autoimmune Diseases coverage for services provided at Northwestern Memorial Hospital by Dr. Richard Burt. Also note that some US States court-ruled the insurance companies to pay.

However since it is still not FDA approved, people with MS in the US are also unfairly having to struggle to get this treatment. The free drug trials have strict conditions and the cut off age is decades younger than what is the cutoff age for people to get HSCT for cancers (regularly up to the age of 65 or older as long as otherwise healthy).

March 14, 2016

I want to sincerely thank everyone that helped make the spaghetti dinner and silent auction such a success! As each event brings us closer to stopping the progression of multiple sclerosis, it is also a way to bring family and friends together. I believe a good time was had by all.

First I want to thank my husband Lance for having my back at all times and keeping me sane! Chef, Richard Robertson for making all the yummy pasta! Diana Harper-Chaffee for coming to Nevada from Payson, Arizona to keep me in line and giving her energy, organization skills, and prayer. Karen Lovell for speaking and her prayers, Stephanie Weston for her help with the silent auction. A big thank you my son Jake, my brother Joe Winnicki and wife Kristin, Bryce Askay, Calli & Julia Weston, Laura Banks, Susan McCarthy, and Monica Moore with United Blood Services, for all your help with set-up, serving, and clean-up. Thank you Nanette Pe`a community involvement coordinator with the Gardnerville Walmart for supply donations.

Thank you to the people and businesses in our community who generously donated items for the silent auction including, my dad Joe Winnicki, mother-in-law Jan Lopes, Kent & Lisa DeForest, Priscilla Mott with Distinct Interiors, Marve’s Custom Framing, Stacy Provines Reid with Tinte Cosmetics, Ironwood 8 Cinemas, Galaxy Theatres, Fandango Casino, Lou Zepeda with Nova Glass, Jessica Goza-Tyner with Wild Tree, Rick Webster Silver State Tattoo Co., The Ridge Resorts, Christensen Automotive, Sportsman’s Warehouse, Trader Joes, La Hacienda, Cindi Otto with Mary Kay, Susan McCarthy with Doterra, Red’s Old 395 Grill, Tractor Supply Minden, Carson Valley Garden & Ranch Center, Evergreen Gene’s Carson City, Molly Seals at Sierra Styles, Monique with Reno Accolades Trophies, Bob & Martha with Antiques Plus, Firkin & Fox Carson City, Bike Habitat, Sun King Window Tinting, Round Table Pizza Carson City and Mountain Meadows Cabins Payson, Arizona.

Special thanks to Neil Hill at A Sign Shop, Lisa Coffron Publisher of the Sierra Scoop, Angelina & Rich Ellis at The Entertainer, Debbie McGann at R & T Cleaners & Laundry, and The United Methodist Church in Gardnerville.

The fundraiser was a huge success and wouldn't of been possible without the support, volunteers, and donations from the above mentioned people, businesses and extra donation received.

Thank you all,

DeAnna Lopes and family

December 22, 2015

www.stemcellresearchfacts.org

Multiple Sclerosis (MS) is a disease that has been called “the crippler of young adults", normally affecting people under 45 years-old, impacting each victim a little differently. It can cause blurred or otherwise impaired vision, the loss of muscular strength, poor balance, “tingling” throughout parts of the body bladder control problems, memory lapses and much more. 2.5 million people, including 400,000 Americans are affected by MS, 70% of MS victims are women.

December 6, 2015

In the beginning...

Multiple Sclerosis History

Prior to Dx:

1991 numbness mid-thorax around left side to center of back about 3” wide.

May, 1991 vision 20/70

3-4-98, Loss of hearing in left ear prednisone prescribed since it helped with previous numbness. Notes; possible inflammatory disease.

January 21, 2000, Tingling and blood rush feeling when flexing head and clumsiness/weakness in left arm and hand. I cannot use it to type. Oral steroid taper given, neurologist sees this as potential CNS demyelinating disease. I need an MRI he feels. I have no insurance.

MRI #1, January 28, 2000 extensive areas of demyelination. *See records for details.

February 25, 2000, I have had my first MRI. Neurologist will review scan with the M.S. Specialist he is partners with. He will strongly want me on immunomodulation.

I go back in two weeks.

March 13, 2000, I AM DIAGNOSED. I have Relapsing/Remitting MS with persistent motor symptoms. I was supposed to decide on one of three immunomodulators.

Now to decide on the lesser evil…

March 20, 2000, I chose Avonex 30 mcg at one shot a week. I get chills and flu-like symptoms after injection.

April 12, 2000, some improvement in left hand, trying to get typing ability back. Neurologist says I’m stable and to keep taking the Avonex.

June 14, 2000, still clumsy in left hand, teaching preschool so I do not have to type. Still taking Avonex with soreness at injection site and having some hair loss.

October 30, 2001, I’m doing fairly well, injection reactions from Avonex have subsided and another MRI ordered.

MRI #2, November 16, 2001, Slight progression *See records for details.

December 11,2001, I have black holes.

June 28, 2002, still clumsy in left hand. Experiencing fatigue, given Amantadine 100mg. it did nothing. Neurologist gave a prescription for Provigil to try for fatigue.

November 11, 2002, minor weakness on left side, on Avonex 30mg, filled out survey to see if I can be part of a project for an auto injector. Some sexual dysfunction. M.S. is evil.

MRI #3, December 6, 2002, 2 small punctate areas of enhancement in the parietal lobe region *See records for detail.

January 24, 2003, left arm is more numb and weak, weakness in left leg, and numbness in left torso. Some urinary urgency. Slight dragging of left leg, my black holes are T1 black holes. Prescription for prednisone.

December 01, 2003, friend helps me with shots, this is getting old…

MRI #4, December 15, 2003, New approximately 1.5 cm white matter lesion in the left frontal lobe. New enhancement of multiple lesions in both cerebral hemispheres approximately 10 in number * See records for detail.

May 11, 2004, numbness and tingling in both hands. Did a couple weeks to a month of Zoloft.

MRI #5, November 30, 2004, four new enhancing lesions, by imaging this is one of the worse cases of multiple sclerosis I have seen. * See records for detail.

June 16, 2005, had one infusion of Tysabri then it was pulled from the market. On Avonex. Migraine headaches have started once a month at that time. Imetrex is all that works.

MRI #6, November 2, 2005, Previously seen enhancement has resolved *See records for detail.

November 2, 2005, my white matter lesions are too numerous to count and my neurologist cannot tell if there are more now than before. I must not use much of my brain or the lesions are only on parts that I do not use because I can walk.

May 2, 2006, Feeling tired, blood work ordered to see if I am anemic.

November 7, 2006, doing well on Avonex, normal finger-to-nose and heel-to-shin and normal gait.

MRI #6, November 14, 2006, No change since previous exam of MRI. *See records for detail.

March 19, 2007, cold wet rag on my right thigh, clumsiness and weakness is back on left arm. This is very noticeable, an exacerbation for sure,

Prescribed Medrol dosepak.

December 10, 2007, I had to stop Avonex due to finances; left side numbness and clumsiness prevail. Neurologist left a note for referral for Copaxone.

September 2007, off of Avonex. My MRI”s have worsened significantly. Avonex deemed a failure.

MRI #7, November 16, 2007, One new 5mm in diameter area of ring enhancement *See records for detail.

MRI #8, May 30, 2008, A new focus of T2 bright signal in the posterior limb of the left internal capsule on axial flair slice #20. *See records for detail.

November 6, 2008, Begin Copaxone 20mg per day.

MRI #9 September 15, 2010, There is active enhancement of several periventricular white matter lesions worse on the left side. Including the new lesion in the left frontal lobe. *See records for detail.

September 30, 2010, Fairly stable on Copaxone since 2008. Stayed in the sun too long doing gardening and it effected my walking. I cannot go for hikes anymore and it looks like I am drunk as I walk. 9 seconds to walk 25 feet. I have new enhancing lesions and a new white matter lesion. Ambulation problems. Stopped Copaxone.

Copaxone is a failure.

Gilenya will be approved in less than one week, and I may benefit by starting Ampyra.

November 11, 2010, on Ampyra, it has increased my walking significantly. EKG and Ophthalmologic exam ordered to begin Gilenya. I finished my degree by finger-pecking essays, in Psychology with a post Baccalaureate in Applied Behavior Analysis.

MRI #10, December 19, 2011, Numerous sub centimeter foci of T2 and flair hyperintensity throughout the subcortical and deep white matter are noted. *See records for detail.

March 4, 2013, Still looking for work, I still have clumsiness and numbness that limits my abilities of what I can do. Stable on Gilenya. My 25 feet of walk time is 7 seconds.

March, 2014, I was hired for what I went to school for, working with clients providing psycho-social rehabilitation and behavioral skills training, I love it but I find myself too tired to work to my full extent.

HSCT in 2017! Yes, stop this disease!

Dear Deanna:

First of all I would like to thank you for patience regarding date availability for treatment at Clínica Ruiz. I am pleased to inform you that I have the available dates for 2016. Based on your position on the waiting list you have been assigned for treatment on March 28th 2016.

Two months prior to your scheduled dates I will need the following:

• Your Latest full spinal and Brain MRI Reports (no older than 2 months old) to be sent vía e-mail.

• Treatment to be paid in full vía wire transfer.

• Travel itinerary to arrange collection at airport. Patient must be ready for traveling and staying in Puebla along with a carer for a 4- 6 week period.

As I am sure you understand time is very important, so I would really appreciate your quick response. Please let me know if you have any inconvenient with this date based on the requisites listed above. If it impossible for you to take this date, than another one will be assigned to you later throughout 2016.

Please let me know if I can be of any further assistance.

Kind Regards,

Danielle

I am still raising money, have to reschedule HSCT for another day… Maybe by January of 2017 I will have enough…

December 5, 2015, New job interview next week, I would work 7 minutes from home 4 hours a day.

November 12, 2015

First of many fundraisers is here!

October 29, 2015

I remembered to change U.S dollars to Pesos, My goal has been reduced, Yeah!

October 29, 2015

"The sad truth is that very little research is being done into the root cause of MS because so much money is being made treating the disease with various forms of immunosuppression. The marriage of capitalism and medicine is an unholy one."

Wheelchair Kamikaze

October 16, 2015

Learning more all the time about the Hematopoietic stem cell transplant/transfusion I will undergo. I am relieved that Clinica Ruiz will not freeze my stem cells, they will be refrigerated.

________

This is an explanation.

Stem cell collection in Mexico is unique to all other HSCT facilities in which they do not use cryogenic storage temperature, they use refrigeration temperature to store the collected stem cell graft. I personally see this as an advantage to the patients because of two reasons. Number #1 is that 50% of cells die when cryogenically frozen making it necessary to collect 2M/kg stem cells. But because Mexico does not rely upon liquid nitrogen cryo storage they only need to collect half as many stem cells to ensure engraftment recovery because they don't have a 50% cell death rate. This has the advantage of twice the stem cell survival rate compared to elsewhere and patients spend an average of half the time sitting in an apheresis chair during collection. And number #2 (this is a major advantage) is that DiMethyl SulfOxide (DMSO) chemical preservative is not required in the stem cell graft in Mexico as it is necessarily used everywhere else which means that for patients in Mexico there is no chance of experiencing an allergic reaction from the stem cell infusion and can completely avoid the nearly universal (and usually disturbing) transient chest tightness experienced at all other facilities during stem cell infusion on day 0. This makes the treatment experience much safer and more comfortable in Mexico by not having to use DMSO.

________

This makes me feel safe to have this procedure in Puebla, Mexico.