Category Archives: General

PALS – Patient Airlift Services

As you may recall, Rachel attended college in England. Studying abroad with MG was a challenge. What we did not stop to consider at the time of her departure was the impact that the long flight would have on her. When she arrived at her destination she was exhausted, and as many of you know, exhaustion can aggravate MG symptoms. We quickly realized that traveling coach from NY to London was somewhat of a hardship.

Immediately, I sprung into action to try to make the long flight easier for Rachel. The solution came to us from a dear friend who allowed us to use her Delta Airlines Friends and Family Pass to purchase business class tickets. Business Class made for more comfortable flights where Rachel could actually sleep and get the rest that she needed so as to not aggravate her MG symptoms while traveling back and forth to college.

This ordeal made me stop and think that Rachel was not the only MG patient flying form place to place encountering the problem of fatigue. This realization caused me to try to find a solution. To be completely honest, I have not solved the entire problem. I am still hoping to reach the right person with the authority to provide priority seating for our teens with MG on any commercial flight.

This quest lead me to a fabulous organization made up of compassionate and generous people who take great care in transporting patients with acute or chronic illnesses to and from their destination for treatment.

Allow me to introduce you to PALS.

PALS is the acronym for “Patient Airlift Services,” which is a 501 (c)(3) tax-exempt public charity that arranges FREE air transportation for individuals requiring critical, life-saving medical care and for other humanitarian purposes.

PALS

Stock image of a typical small aircraft

PALS provides pilots and small general aviation planes to allow patients who are suffering from an acute or chronic illness, and have financial limitations, or find it infeasible to use public, commercial or private charter transportation, to receive treatment or care. One major qualification is that each patient must be medically stable as verified by a Medical Release Form completed by their physician. The determination of the ability for the patient to travel in a general aviation aircraft is entirely up to the patient and their physician. The patient must be able to enter and exit the aircraft on his or her own.

PALS is not an air ambulance service.

PALS pilots are licensed, highly skilled and thoroughly credentialed by the PALS Board, exceeding standards set forth by the FAA for volunteer pilots.

Their pilots own and operate a wide range of general aviation aircraft. These are not your standard jumbo jets. Most of the planes are not pressurized and seat four to six persons. Some aircraft are “high-wing” planes that require a step up into the aircraft.  Because these are small planes which are owned and operated by private pilots they typically fly in and out of small airports that are located near larger metropolitan airports.  Transportation to and from the airport must be arranged by the patient.

PALS makes every effort to get the patients to their destinations on time, however, a flight may be cancelled due to weather conditions. The patient must be able to reschedule or cancel their appointment in the case of inclement weather.

PALS generously agreed to partner with us and this partnership is important to The Rachel Esther Myasthenia Gravis Foundation because together we can insure that our teenagers meeting the qualifications of PALS have one less obstacle in getting the care they need to stabilize their MG. We owe them our sincerest debt of gratitude.

For more information on the services that PALS provides please contact us at 347-488-0018 or visit the Patient Airlift Services website.

Online Myasthenia Gravis Teenage Support Group

I want to share some exciting news with you. The Rachel Esther Myasthenia Gravis Foundation along with Sunrise Counseling Center is pleased to announce the launch of the first Online Myasthenia Gravis Teenage Support Group in the country.

This support program will provide a safe environment for teenagers with MG to discuss their disease with peers under the guidance of a Supportive Coach. It is of great importance that young people who are diagnosed with any chronic disease have a strong support system in place. Our Myasthenia Gravis Teenage Support Group will provide teens with the coping skills necessary to meet the myriad challenges of MG. A traditional support group is inaccessible to most teenagers with MG because they are few in number and live throughout the country. Thus, the online support group is an innovative way of solving this unique challenge.

Online support is not expected nor intended to treat more serious issues that would require face-to-face, formal psychotherapy.

The first group will meet Tuesday, December 13, 2011; space is limited. Please contact us if you want to join the group. We are already making plans for a second group.

June 2011- MG Awareness Month

June is Myasthenia Gravis Awareness Month. I trust you will take a minute to make a difference in the lives of teenagers with Myasthenia Gravis.  This is the perfect time to give hope to these teenagers.

We are dedicated to helping teenagers with Myasthenia Gravis. Whether you are personally affected by Myasthenia Gravis or have a family member, friend, or an acquaintance who confronts this disease, we all have a reason to hope for a world without this debilitating neuromuscular disease.

I’d like to share some of our goals.

  • Provide an online MG teenage support group.
  • Establish a transportation stipend program to help teenagers with MG attend school and treatment.
  • A $10,000 Grant for a Myasthenia Gravis Teenage Needs Assessment Study.

Please make your Online Donation today by clicking Donate in the right side panel!

Your 2011 tax deductible gift is greatly appreciated.

  • $25 – Friend
  • $50 –  Sponsor
  • $100 –  Patron
  • $1,200 – Silver Benefactor – Provides funding for the Transportation Stipend.
  • $3,800 – Gold Benefactor – Provides funding for the Teenage Support Group.
  • $10,000 – Platinum Benefactor – Provides the funds needed for one grant.
  • Your choice – $ ______. No gift is too small; each and every gift is sincerely appreciated.

Myasthenia Gravis Teenage Support Group

We are in the process of forming a Myasthenia Gravis Teenage Support Group. We need at least three teenagers to contact us with the desire to join the group so that it can move forward.

The Rachel Esther Myasthenia Gravis Foundation is a New York based foundation but the good news is that we are planning an Online Support Group so that we can reach as many teenagers as possible across the United States.

Teens please call or E-mail us to let us know that you are interested in joining the support group.

Contact Cynthia at: 347-644-0018

E-mail: Cynthia@RachelEstherMGFoundation.org

Beginning 2011 with Thanks

I want to start the New Year by thanking the Directors, the Executive Board and Advisory Board for all of your hard work in helping me build The Rachel Esther Myasthenia Gravis Foundation. Furthermore, the doctors, nurses and other health care professionals who have listened and offered advice for the Foundation deserve thanks as well.  Their input has been important and has helped shape many of our goals.

Next, my family and friends are in a group all of their own, they are truly remarkable people. That said, I admit I was deeply touched by their overwhelming generosity and willingness to help teenagers with Myasthenia Gravis.

Finally, two women deserve to be singled out, Chris Almvig, Executive Director and Amy Ehlers, Program Coordinator of the Myasthenia Gravis Association located in Kansa City, Missouri. I want to personally and publicly extend my thanks to them because they are outstanding role models for me to emulate. These two women have spent countless hours encouraging me and offering their expertise in reaching out into the community to help anyone with Myasthenia Gravis. Words cannot adequately express my deep gratitude for their support and the knowledge that we are working towards a common goal – to help any person with MG and to one day find a cure for MG. Please visit their website at: www.mgakc.org and see what makes these wonderful women exceptional.

Holiday Giving

The Rachel Esther Myasthenia Gravis Foundation was established as a tribute to my daughter and her boundless energy to combat this wearisome disease. Rachel was 14 years old when she was diagnoses with MG. It was a life changing moment for her and our family.

Whether you are personally affected by Myasthenia Gravis or have a family member, friend, or an acquaintance who confronts this disease, we all have a reason to hope for a world without this debilitating neuromuscular disease.

During this holiday season I trust you will take a minute to make a difference in the lives of teenagers with Myasthenia Gravis.  This is the perfect time to give hope to these teenagers.

I’d like to share some of our goals for the upcoming year.

  • Educate teens with Myasthenia Gravis as well as their families
  • Provide an online teenage support group with a trained healthcare professional
  • Establish a transportation stipend program to help patients get back and forth to necessary treatment facilities
  • A $10,000 Grant for a Myasthenia Gravis Teenage Needs Assessment Study

I know you care about creating a world with less infirmity; with your help imagine what we will be able to accomplish together in the upcoming year.

FDA Safety Alerts and Recalls

You are your own best advocate for managing your MG treatment and an important aspect of that is learning where to look for help. One important resource is the FDA (The U S Food and Drug Administration). Please refer to their website for updates and safety alerts at:
http://www.fda.gov/Safety/MedWatch/default.htm

According to one pharmacist that I spoke with, the recall information is generally intended for pharmacists and health care professionals. However, patients may contact their pharmacist or health care professional for more details on the alert or recall.

Occasionally, the FDA may issue an alert or recall of a product that may have been used in your treatment. Recently, the following alerts or recalls have been issued:

October 15, 2009 an alert was issued by the FDA for Excelsior Medical 5 ml Fill in 6 cc Prefilled Saline Flush Syringes: Recall – Potential Loss of Sterility. For complete details go to:
http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm229781.htm

September 23, 2010 there was a voluntary market withdrawal of Octagam 5% Liquid Preparation. For complete details go to: http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/Recalls/ucm227133.htm
May 27, 2010 a market withdrawal for GammaGard Liquid was issued. For complete details go to:
http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/Recalls/ucm214365.htm

In the management of your treatment you will build relationships with caring people who are very willing to help you cope with every aspect of your treatment. Always reach out and ask if you have a question.

June is National Myasthenia Gravis Awareness Month!

The Myasthenia Gravis Foundation of America has dedicated June as MG Awareness month. People across the country are mobilizing to bring attention to MG to raise awareness and funds to find a cure.

Monday, June 7, 2010 at 7AM the Myasthenia Gravis Foundation of America will be featured live on the Early Show on CBS!

The Rachel Esther Myasthenia Gravis Foundation supports the superb work that the Myasthenia Gravis Foundation of America does for the MG community.

Please visit their website for more information: www.myasthenia.org and join in “Uniting to Find a Cure!” because “Together We Are Stronger!”

The Snowflake

A rare disease affecting a relatively small number of people is commonly classified as an “Orphan Disease.” That reference still makes me shudder when it is used to describe Myasthenia Gravis! Rachel did a report for her Public Relations class and used the term “Snowflake” to describe a product that was unique. She planted a seed in my mind and shortly thereafter I came across several references to Myasthenia Gravis which referred to it as a “Snowflake Disease.”

A “Snowflake Disease” is one in which the disease can manifest itself in many different ways causing each person to have a unique set of symptoms and treatment options. It can also describe the individual patients and their unique experience with the disease.

Everyone knows that as many snowflakes as there are, there are no two alike. The snowflake is representative of something unique and multifaceted. The same can be said of MG patients. While there are similarities that unify MG patients, no two people have the exact same symptoms. Additionally, the progression of the disease may differ from person to person and at any given moment some people simply go into remission.

The snowflake is a symbol of something that is truly one of a kind and a marvel. Despite the fact that a single snowflake looks delicate, it is the base of something strong and powerful just as a Myasthenia Gravis patient is strong and powerful overcoming the challenges of the disease.

The unique qualities of each Myasthenia Gravis patient and the inner strength that they have to endure and surmount the challenges that Myasthenia Gravis brings is best represented by the snowflake. It is for these reasons that the snowflake is the emblem for The Rachel Esther Myasthenia Gravis Foundation.