SIMD 2018

PAF Exhibits at the 40th Annual SIMD Meeting – March 11 -14, 2018,  San Diego, CA

Jill Chertow represented PAF and the PA Community at the 40th Annual Society of Inherited Metabolic Disorders (SIMD) on March 11-14th in San Diego, California.   PAF partnered with the National Urea Cycle Disorders Foundation (NUCDF) on our exhibit booth to educate providers about hyperammonemia. PAF’s goal was also to network with PAF clinicians and attract researchers to collaborate with PAF on studies for PA .   The meeting was a great opportunity to hear about new research in metabolic disorders, newborn screening updates and issues about access and cost of drug therapies. Elaina Jurecki, M.S., R.D. presented on “Protein Intake Recommendations for Propionic Acidemia in the Evidence-based SERN-GMDI  Management Guidelines.”  Nutrition guidelines continue to be a hot topic.  Interesting poster topics included the use of medical food, liver transplant, and anaplerotic therapy.

During the breaks and meals there was time to network with physicians, dietitians, researchers, medical food providers, advocacy groups, and industry.     There is hope for a number of potential new therapies in mRNA, gene therapy, enzyme replacement therapy and/or new medications for the first time.

Liver Transplantation for Propionic Acidemia: FAQ

Liver Transplantation for Propionic Acidemia:

Part 1 – Answers to Questions that Families May Have

James Squires, MD, MS

Dr. James Squires

Dr. Squires is a liver disease specialist at Children’s Hospital of Pittsburgh of UPMC and an assistant professor of pediatrics at the University of Pittsburgh School of Medicine.

Jodie M. Vento, MGC, LCGC

Jodie Vento is a genetic counselor and manager of the Center for Rare Disease Therapy at the Children’s Hospital of Pittsburgh of UPMC.

What can we expect that a liver transplant could do for our child?

Based on experience to date with liver transplants in children with Propionic Acidemia (PA),we can say that after a liver transplant,children are likely to have a substantially better quality of life and a dramatic reduction in metabolic crises. It’s important for families to understand, however, that liver transplantation is not a cure for PA. This is because the enzyme deficiency that causes PA exists throughout the body, not just in the liver.

The liver transplant serves as what we liver specialists call a bulk enzyme replacement, providing enough functional enzyme to minimize – if not eliminate –metabolic crises, which are the most severe complications of PA for affected children as well as one of the most frightening features of the disease for families.

Because complications related to PA may still occur following a transplant, there will be a continued need for your child to get follow-up care with one or more medical specialists.

 

Is there a minimum or “best” age for a child with PA to have a liver transplant?

There is no minimum or “best” age. At our center, the average age of a liver transplant for a child with PA is about seven years old, but we have performed transplants in children as young as one year old.

The best time to consider a liver transplant is while the symptoms of PA are still reasonably well controlled. There is also no minimum age for undergoing a pre-transplant evaluation or being placed on the transplant waiting list.

What should we consider when deciding where to take our child for a liver transplant evaluation?

The most important factor to consider is the experience of the surgical team performing liver transplants in patients with PA and other metabolic diseases. These patients have complex needs that are different from those of patients receiving liver transplants for other conditions.

The pediatric liver transplantation program at Children’s Hospital of Pittsburgh of UPMC was established in 1981 by world-renowned transplant surgeon Thomas E. Starzl, MD, PhD. Our t Director of Pediatric Transplantation, George Mazariegos, MD, FACS, pioneered liver transplantation for children with metabolic diseases in 2004. Since that time, Children’s Hospital has performed more than 330 liver transplants for children with metabolic disease,more than any other transplant center.

We’ve also performed more liver transplants in children than any other center in the United States and more living-donor transplants than any other pediatric center in the country. Our one-year survival rate for pediatric liver transplant patients is 98%, exceeding the national average of 95%, according to the Scientific Registry of Transplant Recipients, Jan. 2018 release.

In addition to our world-renowned and experienced liver transplant surgeons, our Center for Rare Disease Therapy includes international experts in the diagnosis and treatment of PA and other metabolic diseases.

How would we start the process of having our child evaluated for a liver transplant?

I can tell you how the process works here at Children’s Hospital of Pittsburgh of UPMC. It starts with a referral from your doctor or hospital requesting that we evaluate your child. We also receive self-referrals directly from interested families. We will ask the doctor or hospital, or both, to send us all of your child’s medical records.

We will look at the records carefully to help us understand your child’s medical history and current situation. This information helps our multidisciplinary team develop an individualized plan for your child’s evaluation visit. For example, if your child has recently had certain laboratory or imaging tests done, we won’t repeat those tests unless there’s a valid medical reason for doing so. Understanding how the disease is affecting your child helps us identify which specialists your child should see during the evaluation.

It’s important for families to know that undergoing a pre-transplant evaluation involves no commitment on either side. It carries no guarantee that your child will be listed for a transplant or, conversely, any requirement that you must agree to have your child placed on the transplant waiting list. We can answer questions, provide information, and make recommendations. Ultimately, however, the decision to proceed with a transplant, or not, is a personal one for each family to make.

The evaluation is an opportunity for the family and the health care team to meet and get to know each other, as well as for the family to gather information and get answers to any and all questions you may have. We hope you’ll feel comfortable raising any concerns. Please don’t hesitate to ask us about any issue that’s on your mind. There are no dumb or silly questions. And, of course, if after you’ve gone home you think of something that you wish you had asked, please give us a call.

You can expect that the evaluation will be a two- or three-day event. The staff of our Center for Rare Disease Therapy will work with you to arrange for you, your child, and other family members to stay near the hospital, either at our Ronald McDonald house or at a nearby hotel, while you’re here for the evaluation.

We’ll send you a schedule in advance of your visit. This will tell you which medical and surgical specialists you’ll be seeing at what times and what laboratory or imaging tests we would like your child to have during the evaluation. To the extent possible, we try to anticipate all the testing we’ll need so that it’s a relatively smooth process while you’re here.

Please tell us more about what we can expect during our child’s evaluation.

Because PA is a genetic disease, the specialists you’ll see will likely include a medical geneticist and a metabolic dietician. Also, because PA often causes heart problems, your child’s evaluation is likely to include basic heart function tests and an assessment by a cardiologist. Depending on how the disease is affecting your child, the evaluation may also include visits with specialists such as the following:

  •         A neurologist, to assess brain function
  •         A gastroenterologist, to assess pancreas function
  •         A hematologist, to assess bone marrow function

Although we try to anticipate all the testing we’ll need and schedule it in advance, sometimes we may decide that it would be helpful to do an additional test that wasn’t originally on the schedule. For example, depending on the results of the basic heart function tests, the cardiologist might want to do a “stress test” that will provide more detailed information and measurements relating to how well your child’s heart is functioning.

 

If we decide to go ahead with listing our child for a transplant, what are our options for obtaining a donor liver? How long can we expect it to take to find a compatible donor?

PA is considered a high-priority condition for liver transplantation, so your child’s name will be near the top of the waiting list. However, because demand for donor livers is high and supply is limited, I tell families to be prepared to be on the waiting list for several months.

With any liver transplant, careful testing needs to be done to ensure compatibility of the donor liver and the transplant recipient.Many factors can influence the waiting time for a compatible organ. For example, a child with an uncommon blood type may face a longer wait.

In general, child-size donor livers are scarce. A unique feature of the liver, however, is that it is the only organ in the human body that can regrow. This means that in some cases it’s possible to transplant a section of a healthy liver rather than the whole organ. For example, a child who needs a liver transplant may receive a section of a liver from an adult donor. You may hear this type of transplant referred to as a “reduced-size” or “split” liver transplant.

Another type of liver transplant involves a living person – such as a relative, friend, or even a stranger – donating a section of their liver to someone who needs a transplant. Living-donor transplants may be an option for some children with PA. However, because PA is a genetic disease, parents and possibly siblings may be carriers of one of the genetic defects that cause the disease. Someone who is a carrier would not be a suitable living donor.

The good news is that children who receive a partial liver seem to do just as well as those who receive a whole liver. All of the options for obtaining a donor liver, including a reduced-size, split, or living-donor transplant, are discussed during the pre-transplant evaluation.

We’ve decided that a liver transplant is right for our child. What are the next steps?

When your child’s name is placed on the liver transplant waiting list, we will give you a pager that you will need to take with you everywhere you go so that we can reach you right away when we get a call that a matching donor liver is available. We don’t know when that call will come, but when it does you’ll need to be able to get to Children’s Hospital in a safe, but timely fashion. The transplant team will work with you to establish a ‘travel plan’ for you and your family for when the transplant is likely to occur.

While your child is on the waiting list, our specialists will work with your local doctors to care for your child and optimize their medical condition ahead of the transplant.

We know that waiting can be a difficult time for families. Your transplant coordinator is always available to respond to your questions and concerns and can also help you make travel arrangements.

Once you arrive at the hospital, preparations for the transplant may take from 12 to 24 hours. Your child will undergo another round of tests to confirm that the donor liver is a good match. Your child will also need to fast before surgery. Our metabolic dieticians will help us prepare intravenous fluids to provide your child with an individualized balance of fats, protein, and glucose to maintain stability while they can’t take anything by mouth.

The liver transplantation surgery may take up to several hours, although this varies in each case. While your child is in the operating room, a member of the transplant team will keep you informed on the progress of the transplant.

After the surgery, your child will go to the intensive care unit to be monitored closely until their condition is stable. Then your child will be moved to the liver transplant unit. Staff here will help you learn about your child’s medications, diet, need for follow-up care, and anything else you’ll need to know to care for your child.

After the transplant, will our child have to take anti-rejection medication?

After a liver transplant, you should expect that your child will need to take medication for the rest of his or her life to prevent organ rejection. The body’s normal reaction to a transplanted organ is to recognize it as a “foreign agent” and mount an immune response against the new liver. Anti-rejection medications suppress the immune system, which is the body’s defense system against illness and infection, to prevent it from attacking the new liver.

Because anti-rejection medications weaken the immune system, your child may be more likely to get infections – and those infections will be harder to treat. You will need to notify the transplant team at the first sign of an infection, such as a fever, chills, sweats, coughing, nasal congestion, diarrhea, redness or swelling, pain, or vomiting. A referral to a doctor may be needed as well.

With immune-suppressing medications, the goal is to find a treatment plan that achieves the needed degree of immune suppression while causing the fewest and least harmful side effects. Regular blood tests will help your child’s doctors monitor the medications’ effectiveness.

The risk of organ rejection declines over time. This means that in time your child should be able to take lower doses of anti-rejection medications. Most likely, however, he or she will need to continue taking at least a low dose of immune-suppressing medication lifelong.

Here at Children’s Hospital of Pittsburgh of UPMC and elsewhere, research is underway to learn more about whether some liver transplants patients can eventually stop taking immune-suppressing medication without increasing their risk for rejection of the transplanted organ. This research is a long-term effort, however, and it will be years before we can answer this question.

For more information, please visit: www.chp.edu/rarecare or call (412) 692-RARE (7273)

In Part 2 of this article, Dr. Squires will summarize the findings of a recent study of outcomes in children with PA and methylmalonic acidemia who received liver transplants at Children’s Hospital of Pittsburgh of UPMC.

2017 Warrior Wisdom Conference Welcome

Welcome

The Propionic Acidemia Foundation invites you to join us at the 2017 Warrior Wisdom Conference in Deerfield, Illinois to be held at the Hyatt Regency Deerfield from June 8th – 10th, 2017.  You will hear from physicians and researchers about propionic acidemia and have the opportunity to learn more in small breakout sessions of your choice. Take this opportunity to learn about current studies on propionic acidemia and how you can participate and move us forward in finding better treatments and cure.  As always, there will be ample time for networking.   Children will have fun with our volunteers and make new friends.   Healthcare providers and researchers will have the opportunity to learn more about PA and meet the families they are striving to help.

For sponsorship information e-mail [email protected]

A Heart Felt Thank You to our Conference Sponsors

Platinum Sponsors 

School Chest Head purple   Nutricia Logo

Gold Sponsor

Recordati Rare Diseases

Silver Sponsor

Cambrooke Therapeutics

Supporting Sponsors

Vitaflo

PKU LogoMevalia Logo

Bryan K.’s Story

Bryan’s Story

Hello for those of you don’t know me, my name is Bryan. I am 31 years old. I was born with Propionic Acidemia.Bryan  In the beginning doctors did not think anything was wrong with me. They told my mom I was just a sleepy baby but my mom knew that something was wrong. I was officially diagnosed at Saint Cristopher’s hospital when I was only a few months old. Shortly after I would start being seen at Children’s hospital of Philadelphia.


When I was really young I suffered a metabolic stroke and was in a comma for four days. The doctors said I would never walk or talk. That was not an option for me. Remembering the days of the wheelchair, walker and speech classes reminds me to be thankful for where I am at today. I am able to walk and talk just fine. However Propionic Acidemia has it ‘s effects on me. Until the age of 24 I had a feeding tube  for drinking a special formula called Propimex – 2! Today I am able to drink it by mouth. What I like to do is mix it with two cups of whole milk with strawberry syrup. From my Propionic Acidemia I also suffer from Cardiomyopathy which effects my hart. I’m taking carvedilol 25 mg to keep it under control. I was originally on Lisinopril then I learn that it can be harmful to your kindney’s. (Important to know)

My chronic kidney disease which was not found by metabolic doctor but believed to caused by my Propionic Acidemia is at stage three. The weird thing is normally with kidney diseases they only get worse, but mine has actually gotten better. One of the big things is to drink lots of water. I try my best to drink sixty four ounces of water a day.

 

Bryan KNow a day’s my health is really good. I work as a cashier at a food store but  dream is to public speaking. I have my own apartment and exercise daily cause I know how important it is for my muscles, mind and motor skills. I like yoga but anything you can do will help. I’m a picky eater but I am trying to teach myself to eat healthier. hope this article helps give people they can a somewhat normal life with Propionic Acidemia!

Check out my blog.

 

 

Jazmin

Jazmin G. Jazmin

There are four children in our family, ages 16, 14, and our 6-year-old twins. Jazmin is 6, she was born on 1st July, 2012. She became ill for the first time in March 2016, she caught a cold.  She got gradually worse: vomiting, somnolence, and because of not being treated well enough, our daughter fell into coma. As a result of the hospital examination, Encephalitis viralis was diagnosed. Jazmin was examined for different viruses and metabolic diseases. The sample taken from the spinal cord was negative. After that she recovered without no further treatment.

Jazmin is fine now, developing well with 19 grams of daily protein intake. She eats by the mouth. She does not attend kindergarden yet, but she is really looking forward to it.

Partners in Progress: Families and Scientists Catalyze Research for Rare Diseases

“Partners in Progress:  Families and Scientists Catalyze Research for Rare Diseases”

On Nov. 15, 2017, Baylor College of Medicine and Texas Children’s Hospital hosted a panel discussion as part of theEvenings with Genetics seminar series held at the Children’s Museum of Houston. The topic was “Partners in Progress:  Families and Scientists Catalyze Research for Rare Diseases” and panelists traveled from both coasts and the center of the country. Panelists included Jill Chertow Franks, President, Propionic Acidemia Foundation; Cynthia Le Mons, Executive Director of the National Urea Cycle Disorder Foundation, Tracy Smith Hart, Chief Executive Officer, Osteogenesis Imperfecta Foundation and Brendan Lee, MD, PhD, Robert and Janice McNair Endowed Chair, Professor, Department of Molecular and Human Genetics, Baylor College of Medicine. These family/scientist partnerships are a new and exciting development in the research efforts for those impacted by rare diseases.

The audience of almost 80 people consisted of parent leaders, rare disease foundations, medical students, genetic counseling students, pharmaceutical companies and undergraduate biotech majors. Each panelist discussed the partnerships with rare disease organizations and scientists and their strategies for success in obtaining funding for research from the National Institutes of Health (NIH). In addition, panelists shared how they became involved in the rare disease organization and offered advice for other rare disease organizations as well as researchers with regards to working together to submit requests for funding. Dr. Brendan Lee discussed the positive impact of family/scientist partnerships and that these collaborations highly beneficial for progress in understanding rare disorders and developing effective therapies.

Susan D. Fernbach, RN, BSN

Director of Genetic Outreach

Director of Diversity and Community Engagement

Assistant Professor, Dept. Molecular and Human Genetics

Baylor College of Medicine/Texas Children’s Hospital

Annabelle’s Transplant

Annabelle’s Transplant

Annabelle Grace was born September 20, 2016 and like many children with Propionic Acidemia (PA) she went Annabelle Birthinto metabolic crisis a couple of days after birth.  After talking to our genetics team in December 2016 we started pursing the option of a liver transplant for Annabelle.  Even though we managed Annabelle’s care so meticulously she would still end up in the hospital every couple of months for high ammonia levels above 100 (often for no reason and with no detected illness).  Annabelle had a g-tube placed when she was two weeks old, but even with pushing fluids and using sick day formulas we found it difficult to keep her metabolically stable (we checked her ketones EVERYDAY). We tried Carbaglu (which is supposed to help lower ammonia) along with high doses of Carnitine and Bicitra (Sodium Citrate), and those medications didn’t even seem to help control her metabolic instability. Her ammonia on a “good day” seemed to hover inthe 60’s or 70’s, and even the night before her transplant her ammonia was 71. We realized early on that Annabelle had a very severe mutation, and we were told by many medical professionals that she was one bad illness away from another metabolic crisis that could cause serious brain damage.

After talking with other families we were told that the Children’s Hospital of Pittsburgh was the place to go for transplant. The only liver transplant option in our state (North Carolina) was Duke University, but they had never performed a liver transplant on a child with PA.  In April 2017 we ventured up to Pittsburgh, PA for Annabelle’s liver transplant evaluation and immediately fell in love with everything this hospital had to offer.  Annabelle was officially listed for transplant on May 2, 2017.  We immediately started fundraising and used the assistance of COTA (Children’s Organ Transplant Association) which we cannot recommend enough.  Within three months our team of volunteers raised over $50,000 for COTA in Honor of Annabelle to help with any transplant-related expenses.

On August 9, 2017 we got “the call” that would forever change our lives, and we quickly rushed to Pittsburgh.  We Annabellewere very fortunate that our first call was “the call” that gave Annabelle her new liver.  She went back for surgery around 10:30pm that night and they finished her surgery around 9am that next morning.  After surgery Annabelle spent about one week in the PICU. After that week the transplant team moved herto the transplant recovery unit where she stayed until she was discharged.  Around two weeks post-transplant Annabelle did encounter a small episode of rejection.  Even though “rejection” sounds scary it is very common early on in transplant, and mild cases like Annabelle’s are generally treated with some high-powered IV steroids for a few days.  Annabelle was discharged on August 30th and only spent a total of 21 days in the hospital. The transplant/genetics teams in Pittsburgh told us to prepare for complications (as is common with Organic Acidemia patients), but overall Annabelle had very few complications from her transplant surgery for which we are thankful.

After getting discharged we were required to stay in the Pittsburgh area until the transplant team decided she was stable enough to return home to North Carolina.  Luckily, the Ronald McDonald House there is amazing, and instead of hotel rooms they have small one-bedroom apartments making it possible to live there for an extended period of time.  Plus, it is one of the few Ronald McDonald Houses where it is connected to the hospital, so even when Annabelle was inpatient we were able to easily access their services (homemade meals, laundry, therapy pets, etc.).   We stayed in Pittsburgh until late November mainly going to the hospital for weekly labs, therapies, and clinic visits.  The team had to keep changing her medications weekly so that her liver numbers and her EBV levels (Epstein-Barr Virus that she acquired from her donor) maintained a healthy balance.   Our total stay in Pittsburgh was a little over three months, which we were prepared for since the transplant team told us prior to surgery to expect to stay there anywhere from three to six months depending on the amount of complications.

Since we’ve been home it has been a bumpy road.  The transplant team told us that the first winter post-transplant is always very difficult and they were right! Annabelle has been living in a bubble all winter, but she has still been in and out of the hospital the past few months due to illnesses from her immunosuppression.  When we do have to go to the hospital its more for treating the illness caused from her immunosuppression rather than treating her underlying metabolic disorder. When you get a liver transplant it really is just trading out one disease (PA) for the other (transplant) in hopes that treating the transplant gets easier in time.

Even though the liver transplant brings a whole new set of issues (more frequent bloodwork, more meds, life-long Annabelle January 2018immunosuppression), we know that Annabelle is more metabolically stable on a day-to-day basis. Even when she does get sick we don’t worry as much about the significant possibility of brain damage because her ammonia levels stay within the normal range or are only slightly elevated.  The highest her ammonia has gotten post-transplant has been 98 (from frequent vomiting), and her new normal on a “good day” now averages in the 30’s.  It’s also been amazing to see the developmental progress she’s been making post-transplant.  She’s so much more alert, and her overall energy level and muscle tone have increased greatly.

Since Annabelle’s transplant we have been able to come off of Carbaglu and Bicitra, but she is still receiving Carnitine (which we were told she’ll be on for the rest of her life). Her feeding skills are still lacking, and getting her to eat by mouth is still a struggle. However, she’s getting feeding therapy and making progress so we are hopeful that she’ll eventually eat enough food by mouth to come off of her formula.  Her protein intake can be less restricted now, but since she’s primarily tube fed her metabolic dietician has been conservative (1.3g/kg) and hasn’t tried to push her protein as long as her amino acids stay within the normal range.  The main food advantage post-transplant is that we don’t have to weigh her solid foods now and we just go by the nutrition label.  Also, if she throws up we don’t have to immediately pump more formula back in her; now we just let it go unless the vomiting becomes excessive.   There’s a lot more wiggle room in her overall stability,and we aren’t “living on the edge” every single day like we were pre-transplant.

We know the decision to transplant your child is a difficult one, and we’re very open to discussing our journey with any families that would like to speak with us.  Please feel free to see more about our journey at www.CotaforAnnabelleGM.com where you’ll be able to find our blog posts, as well as, a link to Annabelle’s Facebook Page where you can see photos and videos from our transplant journey.

Sincerely,Annabelle's Family May 2017

Mike, Charity, and Annabelle

Nila B.

Nila’s Story

Nila Rechelle was born 1/6/12 at 4:02am via emergency cesarean. She was three weeks early and weighed in atNila Pic 6lbs 4oz and 19 inches long. She passed all initial screenings and appeared to be a healthy baby girl. She did struggle to latch, so I pumped and bottle fed her. She did not make any attempt to suck whether it be breast or bottle. The first day she was able to keep the breastmilk down, but then I was unable to produce anything, so we introduced formula to keep her fed. Shortly after the first formula, Nila began to projectile vomit anything that went in. Joe and I were concerned for her not being able to keep anything down. The nurses over and over tried reassuring us this was completely normal for a new baby. The next day Nila began to turn jaundice on us. She had to stay under bilirubin lights 24 hours a day and only out of the incubator to feed and diaper changes. Her color was improving minimally and her feeding seemed to improve slightly. She had to stay in the hospital an extra day. The doctor released us and we went home. All seemed well for the first few days home with the exception of a few vomiting episodes. Then, we received a call from our pediatrician letting us know we needed to take her to the hospital the next morning for additional blood spots and urine analysis. He let us know her newborn screening came back with signs of a metabolism disorder similar to PKU. He scheduled her first appointment with Riley Children’s Hospital in Indianapolis the following Monday with the Genetics team. The blood and urine were rushed off to Duke and we worried and waited impatiently for Monday. We got to Riley and met the team, they informed us of her diagnosis of Propionic Acidemia. This was a huge blow for us. How could our perfect baby girl have to deal with such a terrible disease? How were we going to manage this? So many questions and so many unknowns. Lucky for us, we came in contact with several families through Facebook forums and the dieticians and genetics counselor became family and we were in constant contact. What seemed so scary at first, motivated us and we learned so much and found out it wasn’t as terrible as we thought.

Nila struggled with her initial milestones such as holding her head up, rolling and crawling. She had Physical Therapy, Occupational Therapy, and Developmental Therapy several times each week. Once we strengthened her tiny muscles she took off. She zoomed through her milestones! She walked right before 10 months and then she was released from therapy. She has had 17 hospital stays and many more lengthy ER visits for D10 fluid boosts. Ear infections, gastrointestinal bugs and the periodic cold were the main reasons for her hospital stays and visits. The only metabolic stay was a 1 week stay after she had gotten RSV. We were close to getting a tube in but Nila got stronger each day with her sick formula and D10 and started eating again. To date, she presents as a mild case of PA, but we do not take that lightly as she may began to show late onset symptoms as she gets older.

She has always eaten by mouth. She was recently taken off of her metabolic formula and she loves it! She has an extra 8 grams to eat in regular foods in addition to the 28 grams she already gets through food. She enjoys mac-n-cheese, chips, mushrooms, fries, fruits of all kinds, pickles and popsicles galore. Our biggest struggle now is to make sure she gets her daily protein intake goal met and to make sure she is not sneaking food.

Nila is thriving and doing everything a 6 year old girl is able do! Nila started Kindergarten this past fall and she is one of the top students in her class. She was selected to participate in the High Ability class at one of our local schools. She is smart as a whip and is learning so much in her outdoor kindergarten class. She loves gymnastics, playing softball, riding her bike, fishing, gardening, painting nails and doing her make-up, digging for worms, exploring outdoors and making mud slime!

Mindfulness Meditation

Mindfulness Meditation

An Ancient Tradition with Practical Application

Vicki Ancell Sheahen, MBA, CPC, CCC

Pathway Coaching

“We cannot stop the waves, but we can learn to surf” Jon Kabat-Zin

Meditation has taken its rightful place in western society. The benefits of meditation, from reducing stress, modulating hormonal functioning, especially of oxytocin and cortisol,and reducing the intensity and frequency of negative and chronic stress reactions are now being documented and used by medical doctors, medical clinics, such as Mayo, and many other professionals today.

Meditation strengthens our ability to cope with difficult emotional experiences and increase emotional wellbeing by mitigating negative thinking, including rumination. Meditation as a way of being teaches us to manage the “narrative” in our head and helps us become emotionally proactive rather than reactive.

Mindfulness Meditation is a method that focuses on our breathing, noting when our mind wanders, and gently returning our attention back to our breath. This focus on our breath, noting our wandering mind and returning to our breath is training our brain to be focused and present in our daily lives, what Dan Harris calls the “off the bench benefits” of meditation. The goal of meditation is not to empty our mind, which is impossible, but to focus on the present in spite the narrative in our head.

Basic Breath Meditation

In my practice, when working with new student meditators, I recommend practicing 5 to 10 minutes a day. I also recommend finding a group or meditation coach in your area to help you grow and refine your practice. Set a timer so you are not worried about the time; 5 minutes is a very good and doable start.

Read the instructions below

When comfortable -set your timer for 5 minutes and begin

Find a comfortable position in which to sit for this period. As you allow your eyes to gently close, tune into your body and make any minor adjustments. It can be helpful to remember our intentions of both ease and awareness. Sit in a way that feels comfortable but alert.

We’ll start with a few minutes of concentration practice, just to help our minds settle and arrive in our present time meditation experience.Take a cleansing breath in and feel how the breath awakens your senses. As you breath out, imagine breathing out any tension, stress, or anxiety.

Now allow your body to resume its natural breathing and see where in the body you can feel the breath. It may be in the stomach or abdomen, where you can feel the rising and falling as your body breathes. It might be in the chest, where you may notice the expansion and contraction as your body inhales and exhales. Perhaps it’s at the nostrils, where you can feel a slight tickle as the air comes in, and the subtle warmth as your body exhales.

You can pick one spot to stay with for this meditation practice. As you become a witness to your breathing, we will use “labeling the breath” as a technique to help you stay focused. As you breathe in with awareness say silently to yourself “in” and on exhaling, say silently to yourself “out”.Remember that labeling the breath is a tool to help build concentration and focus and is not a measurement of how good a meditator you are.

You will notice your mind wandering. When your mind wanders, and it always will, we are being offered an opportunity to cultivate mindfulness and concentration. Each time we notice our mind wandering, we’re strengthening our ability to recognize our experience. Each time we bring the mind back to the breath, we’re strengthening our ability to focus on an object in the present moment. Treat this as an opportunity rather than a problem, and return to your “in” breath.

Resources

10% Happier: Dan Harris

Meditation for Fidgety Skeptics: Dan Harris, Jeff Warren, Carlyle Adler

Wherever You Go There You Are – Jon Kabat-Zin

Arriving at your own Door: 108 Lessons in Mindfulness – Jon Kabat-Zinn

No Time Like The Present- Jack Kornfield

Meditation Apps

10% Happier

Calm

Simply Being