9.May 2008

Research News

Research News

There recently has been increasing concern about the recent ? FDA and Black Box warnings regarding Botulinum Toxins Type A and B ( Botox and MyoBloc ). We have received many emails concerning the use of both Toxins and related reports that have been released by the group Public Citizens at www.citizens.org.

Please note the following information we received from Allergan, Inc. :

“The FDA announced on Friday ( 2-7-08)� in an “Early Communication” that it was reviewing certain serious adverse events following the use of botulinum toxins.� The FDA inquiry relates primarily to high dose medical uses of Botox, particularly for the management of juvenile cerebral palsy (see attached our press release� at www.allergan.com ).As many people are not aware, Botox is indicated and used worldwide to treat a variety of often serious medical conditions. � Regarding any serious adverse events reported following the use of Botox therapeutic, it is important to note that in its more than 18-year history since the product was first approved worldwide, reports of serious adverse events following BotoxThe posting of an “Early Communication” by the FDA on Friday (2-7-08 )� is merely a routine protocol used by the Agency to provide early information regarding safety or other related reviews, often before any conclusions are or can be made.� Specifically, the FDA made clear in its communication that “the posting of this information does not mean that there is a causal relationship between the products and the adverse events.”Importantly, the FDA hosted a public teleconference� last week� in which it provided helpful clarification and context, explaining that this review involves only “a relative handful of serious adverse events” and that the primary focus of the adverse events and the FDA’s review of them related to the therapeutic use of BOTOX to treat juvenile cerebral palsy and other large muscle, lower limb spasticities.� While Botox is approved in about 60 countries to treat juvenile cerebral palsy, it is not approved for this use in the

United States. Fortunately, the FDA’s Rusty Katz in the media teleconference was clear to point out that this review involves a small number of adverse event reports involving large doses in a very sick population and should not be interpreted as a suggestion that Botox is not an appropriate treatment for juvenile cerebral palsy.�

The treatment of juvenile cerebral palsy involves very compromised, sick children and it also involves relatively large doses of product (often up to a total of 700 units).� In some of these adverse event reports, the physician had used doses that were much higher than the approved label for juvenile cerebral palsy in those countries that have approved its use.� � � �

As the FDA’s own press release on the topic notes, these adverse event reports do not indicate any problem with a batch of Botox but rather may relate to overdosing by the physician.� Our analysis indicates that when a problem arises in the use of the product for juvenile cerebral palsy, it tends to either be because the patient was already very high risk and sick and/or because a significant amount of Botox was administered.� �

While not approved in the United States, we know that physicians specialized in neurological and neuromuscular disorders have been using Botox for the treatment of juvenile cerebral palsy /spasticity with great success for more than a decade at their own medical discretion; and most physicians who use Botox in this way are well aware of the risk/benefit profile in this population and use it after making an informed medical judgment that the treatment is appropriate.

Furthermore, the product labeling for BOTOX already notes rare select cases of fatal outcomes in which some patients had significant debilitating conditions or may have had a history of cardiovascular disease or other co-morbid conditions. And the BOTOX labels specifically warn that patients with pre-existing neuromuscular disorders may be at increased risk of clinically significant systemic effects from typical doses of BOTOX.� Allergan will discuss with the U.S. FDA whether further clarify about the definition of juvenile cerebral palsy as a “neuromuscular” disorder is needed in the U.S. Botox label, and make any appropriate changes, as needed, following the Agency’s conclusion. ” ~ Corporate Communications, Allergan, Inc.

Further Information :

Allergan, Inc. Responds to Public Citizen’s Allegation Regarding a Fatality Following BOTOX(R) Cosmetic Treatment�

http://agn360.client.shareholder.com/releasedetail.cfm?ReleaseID=290197

http://agn360.client.shareholder.com/releasedetail.cfm?ReleaseID=290726

http://agn360.client.shareholder.com/releasedetail.cfm?ReleaseID=293012

http://www.solsticeneuro.com/news/Solstice_PR_2.08.08.html� regarding MyoBloc.�

Finally, it is equally as important to explain that a report of an adverse event following treatment with a drug does not by itself mean that the drug caused the event, just that the event occurred after treatment with the drug.� So, for instance, if Allergan is notified of an adverse event following Botox treatment from any source, it is required to make an “adverse event report” to the appropriate health authorities even if Allergan or the physician has not established that Botox caused the event and, indeed, even if the treating physician has affirmatively concluded that Botox was not the cause of the event. ~ J.E.� The above is required of any pharmaceutical company. Thus, Rest Assured, Remain Assured, Be Assured.

http://care4dystonia.org/index.php/2008/02/13/cd-and-beb-merz-trials/� Name of this Post.

Media

Does your family not understand your dystonia ? Your Pain ? Have you lost friends because of feeling isolated ? Share the following Videos- Media to teach others about dystonia. You are not alone.

  1. http://www.youtube.com/watch?v=auTIZnbVJSY Are U at Risk ?
  2. http://www.youtube.com/watch?v=8Q4G9DCYnwQ Dystonia Screensavers
  3. http://www.youtube.com/watch?v=XP-pTIiGOHM Twisted Trailer
  4. http://www.youtube.com/watch?v=eWXdKqCvUF8 Dysphonia
  5. http://www.youtube.com/watch?v=44NYsYPCEMQ Dystonia and Environmental Effects. Watch !
  6. Add your Video Listing here !

C4D Media Involvement 2008

  • Inside Edition —-> directed to www.dysphonia.org
  • Dr. Oz Oprah and Friends on XM Radio Feb 2008
  • Nursing Spectrum Jan  2008
  • Nursing Spectrum Feb 2008
  • Dystonia, Inc. July 2008
  • NeurologyNow —> pending
  • RN Magazine —–> pending
  • American Nurse Today——> May 2009
  • Journal of neuroscience Nursing —-> May 2008
  • WegoHealth Forum Dystonia Community
  • Paras Photography—-> June 2008
  • Aleve Bayer Submission
  • Discover Nursing by Johnson & Johnson, Inc.

These 30 second PSAs spots have been prepared to promote awareness of dystonia and essential tremor:

Over 500 Radio Stations have aired the above Public Service Announcements since April 1st 2008. More to Come !

Copyright. 2008 C4D.

Physical Therapy

Many of you have sent us emails asking about Physical Therapy and Exercise. Well, you have arrived to the most comprehensive online resource regarding Physical Therapy and dystonia. This page has been put together with the help of multiple physical therapists. We hope you will find this of value. Please visit our site as we update it frequently.

What is Physical Therapy ( PT ) ?

It’s an important question, and the answer will help you understand how a physical therapist can improve your ability to move and function, while also benefiting your general fitness and health.

Physical therapists are experts in “the science of healing and the art of caring.” Their primary focus is on assisting patients in the ability to return to functional movement, limit complications such as contractures, pain etc.

The Physical Therapy team provides advanced evaluation and management of acute and chronically ill patients with musculoskeletal, neuromuscular, cardiopulmonary, and/or soft tissue impairment. The goal is restoration or maintenance of sensorimotor abilities to promote cognitive, affective and psychomotor skills that will prevent or retard the development of potential sensorimotor dysfunction.

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Types of PT :

There are many specialty areas in the field of physical therapy. Although this is well known throughout the profession, it is often overlooked by the general public. Below is a brief description of the five most common specialty areas in physical therapy. Read on to find out what specialty area is most appropriate for you or your family member. Orthopedic physical therapists diagnose, manage, and treat disorders and injuries of the musculoskeletal system as well as rehabilitate patients post orthopedic surgery. This specialty of physical therapy is most often found in the out-patient clinical setting. Orthopedic therapists are trained in the treatment of post operative joints, acute sports injuries, arthritis, and amputations just to name a few.

There are many specialty areas in the field of physical therapy. Although this is well known throughout the profession, it is often overlooked by the general public. Below is a brief description of the five most common specialty areas in physical therapy. Read on to find out what specialty area is most appropriate for you or your family member. Orthopedic physical therapists diagnose, manage, and treat disorders and injuries of the musculoskeletal system as well as rehabilitate patients post orthopedic surgery. This specialty of physical therapy is most often found in the out-patient clinical setting. Orthopedic therapists are trained in the treatment of post operative joints, acute sports injuries, arthritis, and amputations just to name a few.

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Geriatric physical therapy covers a wide area of issues concerning people as they go through normal adult aging, but is usually focused on the older adult. There are many conditions that affect many people as they grow older and include but are not limited to: arthritis, osteoporosis, cancer, alzheimer’s disease, hip and joint replacement, balance disorders, incontinence and more. Geriatric physical therapy helps those affected by such problems in developing a specialized program to help restore mobility, reduce pain, increase fitness levels and more.

Neurological physical therapy is a discipline focused on working with individuals who have a neurological disorder or disease. These include Alzheimer’s disease, ALS, brain injury, cerebral palsy, multiple sclerosis, Parkinson’s disease, spinal cord injury, and stroke. Common problems of patients with neurological disorders include paralysis, vision impairment, poor balance, inability to ambulate, and loss of functional independence. Therapists work with patients to improve these areas of dysfunction.

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How do I know if I need PT ?

Many people wonder if they are a candidate for physical therapy, or if physical therapy can help their ailment. For physical therapists, however, this is an easy question to answer: Most people can benefit from physical therapy, whether their condition varies from a simple ankle sprain to a complex neurological disorder. Physical therapist Dana Davis describes physical therapy as a conservative treatment method addressing the management, healing, and prevention of injuries and disabilities. I believe this to be very true. Physical therapy uses non-invasive and non-medical tools to help improve total body function. Physical therapists focus on relieving pain, promoting healing, restoring function and movement, and facilitation and adaptation associated with injury. Therapy also focuses on ergonomics or body mechanic training, fitness, and wellness.

What are some important things a physical therapist does?

Physical therapists have many rehab tools available, some specific aspects of physical therapy which you may encounter include:

Stretching

Stretching is vital to maintain good range of motion around a joint. If a patient has stiff joints, normal activities such as opening a jar or climbing stairs can be severely affected. By proper stretching, these functions can be preserved. After an injury or surgery, scar tissue forms, and soft-tissue contracts; this is when stretching is most important. Read more about stretching exercises in this Nature article : http://www.nature.com/sc/journal/v40/n8/full/3101340a.html


Strengthening

Strengthening exercises are performed to help the patient improve the function of their muscles. The goal is to improve strength, increase endurance, and maintain or improve range of motion. Common types of strength training include:

Closed Chain

The closed chain exercises are performed with the foot locked in position on the ground–for example a leg squat. These exercises a performed to help balance the muscle strength. By performing closed chain exercises, the weak muscle (e.g. the quadriceps) and its antagonist (e.g. the hamstrings), will both be exercised and balanced.

Open chain exercises, such as a leg extension, do not balance the muscles this way.

Proprioceptive

Proprioception is the sense of knowing where a body part is in space. This can be a difficult concept to grasp until you lose it, because so much proprioception occurs without out conscious thought. When you lose proprioception of, for example, an ankle joint after a sprain, patients often complain of an unstable sensation of the joint. Proprioception training reteaches your body to control the position of an injured joint. Medically also referred to as spatial disorientation.

Ice and Heat Therapy

Ice and heat are useful to warm up and cool off muscles. In addition, these modalities can stimulate blood flow and decrease swelling. These can be important aspects of the therapeutic process.

Ultrasound

Ultrasound uses high frequency sound waves (not within the range we can hear) to stimulate the deep tissues within the body. By passing an ultrasound probe over the body, deep tissues are stimulated by the vibration of the sound wave. This leads to warming and increased blood flow to these tissues.

Electrical Stimulation

Electrical stimulation is a therapy that is not well understood. By passing an electrical current to an affected area, nerve conduction within the region is altered, which can in turn alter muscle contractility. Patients often experience diminished pain after this type of treatment. An article on use of TENS unit can be found in our Dec 2007 Newsletter.

Aquatic Therapy

Aquatic therapy is a terrific way to regain mobility and maintain strength by doing exercises in a swimming pool. This has become very popular in recent years because many patients who have difficulty exercising can often do very well in the water. The added buoyancy helps support the body and the water provides gentle resistance to increase strength and endurance.

Splinting : Purpose for Splinting ?

  • To immobilize a limb
  • To support a limb
  • To prevent contractures
  • To assist in movement
  • To restrict movement
  • To reduce scar tissue development
  • To prevent-reduce pain
  • To decrease stiffness
  • To prevent deformity
  • To increase function
  • To increase -maintain strength
  • To decrease stiffness

So, What is a Splint ?

Different forms of the splint have been used sparingly throughout history, however, the splint gained great popularity as a medical device during the French and Indian War . Generally consisting of two small wooden planks, the splint was commonly tied around the fracture with rope, cloth, or even rawhide during frontier times in American history. To this day, the splint is commonly used to secure small fractures and breaks as well is being used as a rehab tool post-stroke, neurological events including Dystonia.

Types of Splints : The wrist support has among other good qualities an exceptional cosmetic design that is attractive to lovers of fashion and aesthetics. It is useful in the pre and post operative management of ailments around the wrist. Other uses include sports injuries, after treatment for ganglion, carpal tunnel syndromes, tenosynovitis, trigger fingers, rheumatoid wrist/hand and nonspecific pains.

Visit the site : http://www.righthealth.com/Health-Basic_Facts/wrist_splints/-od-webresultsonly-s to learn more about splinting.

Hand cock-up splints have similar profile as the lower limb splint.

They are used in hand, phalangeal, wrist and forearm injuries as well as pre and postoperative immobilization of the forearm and wrist. Apart from limb immobilization it also provides compression bandaging system.

The lower limb splint are of various shapes and sizes used in immobilizing injured lower limbs. They are not cumbersome, water and body fluid resistant, easily washable, reusable, heat resistant, skin friendly and durable. They are useful in immobilization of all forms of lower limb injuries including trochanteric fractures. It includes the ankle support, below and above knee splints and the trochanteric splints.

Precautions when using a Splint : If you have a removable splint, follow your doctor’s instructions and only remove the splint if he or she says you can. Keep dirt and sand from getting into the cast.

Call your doctor immediately if:

  • You can’t move your fingers or toes.
  • You have severe pain or increased pain that you think is from swelling, and your splint feels too tight.
  • Your hand or foot feels numb or tingles.
  • You have a lot of swelling below your splint.
  • The skin under your  splint is burning or stinging.
  • It’s also important to keep up your muscle strength and tone as much as possible while protecting your injured limb or joint. Your doctor may want you to tense and relax the muscles protected by the cast or splint. Check with your doctor or physical therapist for instructions.

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What is a PT Assessment ?

A physical therapist will initially conduct a subjective examination (interview) of a patient’s medical history, and then provide objective assessment in the form of a physical examination. The subjective examination is guided by the presenting symptoms and complaint, and the objective assessment is in turn guided by the history. This semistructured process is used to rule out serious pathology (so called red flags), establish functional limitations, establish the diagnosis, guide therapy, and establish a baseline for monitoring progress. The objective exam will then use certain quantifiable measurements to both guide diagnosis and monitor progress. The particular focus of a regimen will depend on the system and area being managed. Whereas a musculoskeletal exam might assess joint range of motion, muscle power, and posture among other metrics, a cardiopulmonary assessment might involve lung auscultation and exercise physiology testing. In some countries a physical therapist may order diagnostic imaging tests such as x-rays and MRIs to obtain more information about a patient’s presenting condition and determine a treatment plan, including referral to other practitioners. Physical therapists may also perform sonography, electromyography and nerve conduction testing to aid in the diagnostic process.

Dystonia and PT

www.emedicine.com/med/topic620.htm

http://www.ptjournal.org

www.stayinginshape.com/3osfcorp/libv/i81.shtml

www.clinicalevidence.bmj.com/ceweb/conditions/nud/1211/1211.jsp

www.somatics.com/dystonia.htm

www.functionalrestoration.com/Dystonia%20and%20Secondary%20Symptoms.htm

                Resources :

http://physical-therapy.advanceweb.com/

http://www.amjphysmedrehab.com/

http://www.archives-pmr.org/

Worldwide Links :

National associations

Copyright.c4d.2008.

Kids in Motion

We’ve decided to create this special webpage for parents and Kids in Motion. You’ll find plenty of information about the nervous system, brain teasers, mazes and other activities. If you’d like to write your story with dystonia or other movement disorder, please simply contact us and we’ll post your story, poems, artwork on this web page!

Websites about the Brain

Neuroscience for Kids Fun Brain Brain Briefings Conversations with Neil’s Brain Brains Rule Sensing Fear Exceptional Parent We Move Kid Needs Blackboards and Bandages

Publications Just for Kids

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Did You Know? Miles and Miles of Neurons

There are one hundred billion neurons in the brain. A stack of one hundred billion pieces of paper would be about 5000 miles high, the distance from San Francisco to London.

Music and Kids With Dystonia

Room for Breanna, MySpace.com Breanna’s Wish - To Cure Dystonia Breanna Rose Foundation Nancy Vogl’s Music, MySpace.com

No Pain in Brain

There is no sense of pain within the brain itself. This fact allows neurosurgeons to probe areas of the brain while the patient is awake. Feedback from the patient during these probes is useful for identifying important regions, such as those for speech, that are spared if possible. Source: BrainConnection.com The average adult human brain weighs three pounds and uses 20% of the body’s oxygen. These are just a couple of the many facts we know about the human brain. Source: BrainConnection.com Botox and MyoBloc can help reduce the symptoms of dystonia. How does Botox work? Read the above story: Me and Dr. Move!

Glossary

Neuron: The cellular unit of the central and peripheral nervous systems. Neurotoxin: Any chemical that poisons neurons. Neurotransmitter: A chemical released by neurons to relay information to other cells. Ablation: The removal or destruction of tissue Basal Ganglia: A series of subcortical structures in the center of the brain that are principally responsible for motor tasks. Benzodiazepines: Drugs such as valium and klonopin, most frequently prescribed for dystonia. Dyskinesia: A condition characterized by abnormal involuntary movements. Dystonia: Sustained muscle contractions causing abnormal motor control. For example, co-contraction of flexors and extensors (opposing muscle groups) resulting in the lack of motor control of a limb. Often begins in the foot or limb in early-childhood - often progressing to a generalized form as years pass.

For more info on dystonia visit…

“8-18″ Children’s Program Courage Award Program Junior Advisory Council All of the above programs are offered via the Dystonia Medical research Foundation. Wanna Cure? Get Involved!

Message Boards

The purpose of www.drdcentral.com is to provide a central resource of information about Dopa-Responsive Dystonia (DRD). We also urge you to access www.tylershope.org where you can also meet parents and Kids in Motion !Most of what you’ll find here are links to other sites. If you discover new links or any relevant information, please email us at infoc4d@aol.com. To find out more about DRDCentral.com click here.

Trouble explaining Illness to your child?

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Mazes & other Fun Stuff to do:

Brainteaser Quizzes Optical Illusions Bonus.com Brain games, multiplayer, mazes, puzzles, arcade games, and other online activities. Etch-A-Sketch Online It’s a toy. It’s a drawing tool. Now it is an online game too!

Online Word Search

a d y s t o n I a k l x y p g a d e g I n g n I p o c x w t k I l h j e l e k n s e n e g j o p d e c s t u f r I a m s t r o n g h d r t m I e s t a I m a t t e r w s c v b k l o

Copyright. c4d.2007-8.

Dystonia Awareness: Are you at risk?


NT201 Toxin

Many of you have written asking about the new ongoing NT201 botulinum toxin being offered under clinical trials by Merz Pharma. This webpage is devoted to directing you to the appropriate site about this new purified botulinum toxin.

Background Information on the FDA Drug Approval Process :
1. Pre-clinical (animal) testing.
2. An investigational new drug application (IND) outlines what the sponsor of a new drug proposes for human testing in clinical trials.
3. Phase 1 studies (typically involve 20 to 80 people).
4. Phase 2 studies (typically involve a few dozen to about 300 people). 5. Phase 3 studies (typically involve several hundred to about 3,000 people).
6. The pre-NDA period, just before a new drug application (NDA) is submitted. A common time for the FDA and drug sponsors to meet.
7. Submission of a new drug application is the formal step asking the FDA to consider a drug for marketing approval.
8. After an NDA is received, the FDA has 60 days to decide whether to file it so it can be reviewed.
9. If the FDA files the NDA, an FDA review team is assigned to evaluate the sponsor’s research on the drug’s safety and effectiveness. 10. The FDA reviews information that goes on a drug’s professional labeling, guidance on how to use the drug.
11. The FDA inspects the facilities where the drug will be manufactured as part of the approval process.
12. FDA reviewers will approve the drug or find it either “approvable” or “not approvable.”

Please visit :

http://www.fda.gov/fdac/features/2002/402_drug.html

http://www.clinicalconnection.com is an excellent site where you can find additional information on new research trials.

About NT201 :

In Europe, NT201 toxin has already received approval under the name of Xeomin® in Germany, Mexico, Argentina, Denmark and Sweden. The median onset of action of XEOMIN® was 7 days after injection; the mean duration of effect was 110 days in clinical trials. Merz is pleased to announce that this toxin is :the first Botulinum neurotoxin type A, free of complexing proteins, meaning that it is highly pure and free of other interfering substances. Highlights of this Toxin include :

  • Low antibody formation potential
  • Stable without refrigeration
  • Well known safety and efficacy.

About the NT201 Clinical Trials for Cervical Dystonia in the U.S. are no longer enrolling patients for the trial. However, for Blepharospasm, the Web site DystoniaStudies and the associated phone number are no longer active. Anyone searching for information can go to www.clinicaltrials.gov and search for the protocol number - 60201-0433 regarding this specific trial.

Source : Merz Pharma 2007

Cosmo Program

We have created a new Awareness Program that many of you can participate in at no cost to you. We’ve developed postcards for mailing that reflect our Founders’ favorite flowers- Cosmos ! First, all postcards are free and are shipped by priority mail to you once our own shipments have arrived within 2-3 weeks order to delivery time. Distributing postcards are easy, fun, and very usable by anyone wishing to send a quick note to a family member or friend wishing anyone to create awareness for dystonia for you.

If you’d like to participate in this venture, simply send us your address and the number of postcards you’d like sent to you directly. They are FREE and do not cost you anything. We are not charging anyone for shipping, handling, or other costs related to the production and distribution of these postcards. We have already distributed over 4,565 postcards since Oct 1st 2007.

To view a proof of our standard sized postcards in pdf file format , click here :

C4D Awareness Postcard Proof

View our Online Cosmo Program Advertisement on YouTube

When requesting postcards for awareness distribution , please include your address and the quantity that you would like shipped to you as soon as possible.

    Our Address:
    Care4Dystonia, Inc.
    440 East 78th Street
    Suite 4F C/O Serdans
    New York, NY 10075 USA

You may also email us via infoc4d@aol.com for more information. However , all the necessary information can be found on this webpage.

 

 

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Copyright. C4D. 2007-8

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Your Feedback

Recent Feedback from our Website visitors. Feel free to send in your comments, suggestions so that we can serve You and the dystonia community in the best possible manner.

 Sample Comments received ( partial list ) :

1) You have outdone yourself once again. The information is fabulous - k.s

2) The website is simply AWESOME.- s.d

3) Please thank your website designer, Megan, for doing such a great job. Your site is one of a kind.- r.f

4) I’m so happy to see someone focusing on treatments such as nutrition and pain relief. It all plays a role.- l.r

5) Beka - where do you get all your ideas? Th site is wonderful.- r.k

6) The colors make the site clear and concise. It is filled with lots of
great info. I will pass it along to everyone I know.- H.F

7) Beka- would you consider coming to talk to our Support Group ? We wouldlove to have you. - a.s

8) The Artistic Forum is superb. It motivates me to do something now. - d.k

9) The pain relief section and oral medication is really well done. Conciseand clear. This is the site of my choice now. - b.t

10 ) How can I volunteer for you, Beka ?? - c.d

11) You have always thought “out of the box”, which many have not understood.  But you’re a nurse and know what we, patients, need and deserve. Your site is what we have needed for a long time.- a.k

12) Please send me 100 of your new magnets. What a great awareness idea ! -j.m

13) Hi Beka - I want to contribute my own story with dystonia. - p.m

14 ) You and Megan deserve alot of applause. I love the site. The movie is sooo cool. - h.w

15 ) The website is simply great. - m.s

16) Where do you find the time to do all this ? You have always amazed me. I met you at one of the Symposiums. You were genuine, truthful and didn’t “beat around the bush ” with any of my questions like most docs do. - c.l

17)  Wow…could you send me 1000 dystonia magnets. I lead the Toronto Support Group and my son is a youth director at a synagogue and can distribute several hundred in his “bagel box” fundraiser. -w.p

18) Beka - Will you be in Baltimore at the Dystonia, Inc Symposium. I hope so. - k.g ( Yes, Beka will be there with an education table ! See you there ! )

20) Hi Beka- Can you send 1,000 magnets to us in South Africa or am I being too greedy ? A great idea for awareness. - G.

21) Kudos to the giant steps you are taking and the efforts you are making. K:)

22) You have an awesome site. An Original. - l.s

23) I think your website is simply great. Thank you so much for helping me find doctors who give Myobloc in Hawaii. - T.B

24 ) I’m sending you a donation. Your site is awesome, lots of information, and easy to navigate. ~ T.O

24) Thanks for doing what you have been doing for years. You should be applauded. ~ j.s

25) Thanks for supporting us. The auction items were fabulous. ~ Sandy Issacs, Dystonia Association of Kentucky

26 ) How do you do all this ? ~ Howard, DySTonia, Inc.

27 ) Please help - I can’t get into the Survey. I want to answer the questions. ~ l.s

28 ) Thank you for all you do- The Survey is a big PLUS ! ~ D.N

30) Hi beka - I’m ready to start MyoBloc Injections. What do you suggest ? How did you do with the shots ? ~ k.m

31) beka - I got your Books. Wow! ~ a.l

32) Hello Beka - I’ve been meaning to write for awhile. I just love your website. Can you answer some questions about cervical dystonia. I’m 24 years old…~m.s

33) Hi!- I found your website today and would love to spread the magnets in my area.  I too, am from Michigan.  Would it be okay to have 100 magnets? ~ K.O

34) Beka, I loved the newsletter, absolutely loved it.  Thank you so much for all the hard work and a special thanks to your sponsors and contributors. I love that you can read it two ways.  PDF’s drive me nuts with tremor, being able to read it in Word is just perfect.You are doing a great service to all of us.Thank you. ~ E.

35) Your newsletter was forwarded to me by….Please send me your newsletter in the future. Fabulous Information. Tahnks alot , Beka , fo all you do. ~E.D.

36 ) Hi Beka, Thank you for sharing this, and I look forward to reading about your experience when that is posted on the Website.  You are an INCREDIBLY BRAVE AND COURAGEOUS person!!!!!!  May God Bless you always. 

I will pass your email along to my support group.  Keep me posted on how you’re doing, you are an inspiration to all of us who suffer with this mysterious disorder!

Love & Hugs,

Barb Ellis

Support Group Leader

San Fernando Valley Dystonia Support Group

valdysto@aol.com

Send your comments directly to infoc4d@aol.com . Thanks !

37) Beka - You must be the most active dystnia person on this EARTH ! ~ Turid.

Copyright.c4d. 2006-8.

Our Milestones

This webpage is dedicated to letting you, our website visitor and potential donator, understand what we have accomplished since being provided our non-profit status in 2000. It’s been a long , hard journey that our Founder could have easily given up on, but her dedication to patients and dystonia has and is a ” Must and a First ” in all that she does today.

Our Milestones :

  • 1985 American ST Association forms.
  • 1989 Hemifacial spasms, jaw grinding and tics begin surfacing.
  • 1992 While in Europe Beka notices symptoms of cervical dystonia.
  • 1994 Our Founder serves as Secretary for NSTA , which is short lived as the group splits into 2 entities now known as www.torticollis.org and www.spasmodictorticollis.org .
    • ANDA- Coalition formed by Allergan, Inc., in hopes of forming one universal dystonia group, is also shortlived and not endorsed by all groups.
    • WeMove arrives on the scene.
  • 1998 Our Founder becomes a consultant for www.athenadiagnostics.org as the discovery of the DYT1 gene is publicized by the DMRF and scientists.
    • A chapbook of poems “Dystonia is ” is contributed to the DMRF.
    • Our Founder attends the International Dystonia Symposium in Victoria, BC, Canada.
    • Text for “Im Moving Two ” is written in 3 days and published. Excerpts online now.
    • The vision for multidisciplinary care begins to formulate in our Founders’ mind along with a Board of Directors , all being exclusively actively practicing nurses and allied healthcare professionals.
  • 1999 She, along with Deb Holton, Esq. aka Spazz, begin an online chat support group, eventually, becoming part of www.wemove.org online chat rooms.
    • NBC airs the struggles of our Founder on Dateline in October.
    • The Airing is the first time EVER that dystonia is presented to the public by the media.
    • Beka begins volunteering for the Bachmann-Strauss Fd. in NYC , while continuing to work FT as an ICU nurse at New York Presbyterian.
  • 2000 Together with her Board of Directors, ByLaws are formulated and nonprofit status is sought officially.
    • A donation of $1,300 from the local NSTA Washington, DC chapter helps our Founder develop a website breaking slowly into the goundwork of the Dystonia scene.
    • Since then, the yearly salary of Our Founder as an Open Heart RN within Manhattan , NYC is used to offset overhead costs. This still continues even today for C4D.
    • Care4Dystonia, Inc. does accept voluntary donations, but does not publicly solicit monies from patients or support groups on a formal, regular basis.
    • I’m Moving Two…Are U ? is released as a 263 page book of prose.
    • MyoBloc receives FDA approval for use in ST in Early December.
    • Botox receives FDA approval for cervical dystonia treatment in mid December.
  • 2001 501c3 nonprofit status is obtained by Care4Dystonia, Inc.
  • 2002 Additional media /inprint stories about dystonia are secured by our Founder.
  • 2003
    • Public Awareness continues on the part of C4D
  • 2004-5
    • Our Founder undergoes DBS
    • Foto Essay on DBS created www.parasphotography.com/beka.html
    • NBC Nightly News covers Bekas’ DBS Surgery and progress Video camera icon
    • Dr. Mike Kaplitt joins C4D as Medical Advisor
    • Additional media - TV, print, online- covergae continues
    • Repeat Dystonia Care Survey completed
  • 2006-7
    • Virtual Magpie revamps C4Ds website
    • In Motion Newsletter re-airs online
    • Magnet program initiated
    • Cosmo Awareness Program begun at Weill-Cornell
    • You Tube Are U at Risk ? Video developed online Video camera icon
    • Cosmo Awareness Ad developed Video camera icon
    • Our Publications go online
    • Newly developed tri-fold brochures created and distributed worldwide
    • Our Stories of Hope become a groundbreaking webpage for others to share their stories. Now being used by other non-profits.
    • ST Survey completed Oct 2007
    • LIM Campaign Coalition Membership maintained
    • HON Code Status maintained
    • Monthly EMail Alerts developed
    • By Dec 2007 , over 62k Unique Visitors visit the website.
    • Social networking begins via
    • Donation page updated, results in unexpected donations !
    • Dr. Oz meets Dystonia on XM Radio in Nov 2007
    • O’magazine captured !
    • Pain and Nutrition webpages expanded.
    • Educational Module planning begins with Virtual Magpie.
  • 2008-9

 Copyright.c4d. 2008.

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This site is dedicated to Deb Holton, Esq. aka Spazz.