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Caring for a child with SMA is not only taxing on a family emotionally and physically, but it can also be quite taxing on your finances. Even if you have great health insurance (which let’s be honest, is rare), having a full-time caregiver can be incredibly expensive—whether that’s an outside support worker or a parent …

Caring for a child with SMA is not only taxing on a family emotionally and physically, but it can also be quite taxing on your finances. Even if you have great health insurance (which let’s be honest, is rare), having a full-time caregiver can be incredibly expensive—whether that’s an outside support worker or a parent …

Potential target for severe asthma, inflammatory diseases

Potential Target for Severe Asthma, Other Chronic Inflammatory Diseases Identified

Researchers recently published new insights into the processing of the cystic fibrosis transmembrane conductance regulator protein and possible new therapeutic targets for cystic fibrosis.

If this doesn't make you laugh, check your pulse!

(Blackboard shows foot with descriptions pointing to toes including 'Went to market', 'Stayed home', etc.

I created this all-terrain walker for my daughter, who has mild cerebral palsy.  We love it on sand and in shallow water.

Pinner created this all-terrain walker for pinner's daughter, who has mild cerebral palsy. Great on sand and in shallow water.

New Post: Retrophin, Horizon Donate $3M Each to Rare Disease Institute at Children's National https://alsnewstoday.com/2018/03/02/retrophin-horizon-donate-3-million-to-childrens-national-rare-disease-institute?utm_content=buffere0a0f&utm_medium=social&utm_source=pinterest.com&utm_campaign=buffer

Retrophin, Horizon Donate $3M Each to Rare Disease Institute at Children's National

New Post: Retrophin, Horizon Donate $3M Each to Rare Disease Institute at Children's National https://alsnewstoday.com/2018/03/02/retrophin-horizon-donate-3-million-to-childrens-national-rare-disease-institute?utm_content=buffere0a0f&utm_medium=social&utm_source=pinterest.com&utm_campaign=buffer

Did you know? Spinal Muscular Atrophy (SMA) is a motor neuron disease, affecting the voluntary muscles? Check out this infographic for more SMA facts!

Spinal Muscular Atrophy (SMA) is a motor neuron disease, affecting the voluntary muscles? Check out this infographic for more SMA facts!

August is Spinal Muscular Atrophy Awareness Month. Re-pin and spread the word!

August is Spinal Muscular Atrophy Awareness Month. Useful facts about SMA

New Post: Enzyme Replacement Therapy Improves Quality of Life in Children with GD1, Study Shows https://gaucherdiseasenews.com/2018/03/22/cerezyme-improves-quality-of-life-young-children-gaucher-disease-type-1-study

GD1 Children's Quality of Life Improved on Cerezyme Therapy, Study Says

New Post: Enzyme Replacement Therapy Improves Quality of Life in Children with GD1, Study Shows https://gaucherdiseasenews.com/2018/03/22/cerezyme-improves-quality-of-life-young-children-gaucher-disease-type-1-study

Ben Mattlin is in his 50s and has had plenty of time to come to terms with having SMA. While he's excited about Spinraza, he doesn't want it for himself.

Adult With SMA Shares His Perspective on Spinraza

Ben Mattlin is in his and has had plenty of time to come to terms with having SMA. While he's excited about Spinraza, he doesn't want it for himself.

best hearing-The quality of life for difficulty in hearing people can make a real difference in hearing aids, But Is is a very difficult decision to choose which one is best NHS, or Privately. We have to provide you with applicable information to help make your decision.

Horizon's FA Therapy Granted FDA Fast Track Designation Friedreich's Ataxia News

Caregiver columnist Michael Casten shares the many unique ways his daughter Ella has learned to play, and the toys thought most useful for her development.

SMA and a Child at Play: Having Fun Ella's Way

Caregiver columnist Michael Casten shares the many unique ways his daughter Ella has learned to play, and the toys thought most useful for her development.

August is Spinal Muscular Atrophy Awareness Month

August is Spinal Muscular Atrophy Awareness Month

Spinal Muscular Atrophy Awareness Month (August Get Involved

4 Steps for Reducing Anxiety Attacks

How to Reduce Your Anxiety Attacks

6 Qualities Mindful People Enjoy That Mindless People Don’t

Why Motor Neurons in SMA so Sensitive to Protein's Loss Detailed in Possibly Key Study

New research details why a lack of the SMN protein in SMA patients quickly kills spinal motor neurons, a discovery that could help in treating the disease.

Researchers suggest that the reason some endometriosis patients are underweight is because of dysregulated genes in their liver.

Mice Study Links Liver Genes to Low BMI in Endometriosis Patients

Researchers Identify a New Genetic Risk Factor for Multiple Sclerosis Development Multiple Sclerosis News Today

The PEComa clinical research study is for men and women over the age of 18 diagnosed with advanced malignant perivascular epithelioid cell cancer   or PEComa.This study will evaluate the safety and potential benefits of using an investigational medication to treat your disease.  Read more about our study here: http://www.mypecomastudy.com/the-pec-001-study/  For more information, visit our website to locate a participating site near you: http://www.mypecomastudy.com/current-study-locations/

The PEComa clinical research study is for men and women over the age of 18 diagnosed with advanced malignant perivascular epithelioid cell cancer or PEComa.This study will evaluate the safety and potential benefits of using an investigational medication to treat your disease. Read more about our study here: http://www.mypecomastudy.com/the-pec-001-study/ For more information, visit our website to locate a participating site near you: http://www.mypecomastudy.com/current-study-locations/

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