In The Community

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Spinal Muscular AtrophyLindsey
Familial Chylomicronemia Syndrome
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Ionis Pharmaceuticals is committed to the enrichment and healthy future of the communities where we live and work. Through volunteering and charitable contributions, Ionis supports events that are aligned with our rare disease pipeline. We encourage employees to donate their time and talents to deepen our relationship with patients and our surrounding communities.

2016 Community Involvement

January

January 30

Stanford’s Myotonic Dystrophy Information Meeting – Sacramento, CA

The Stanford Neuromuscular Program will bring together the top Myotonic Dystrophy specialists to speak on issues affecting those living with DM1 and DM2, their caregivers and family members.

February

February 29

Rare Disease Day

Rare Disease Day is an international campaign designed to focus attention on the impact of rare diseases. 2016 marks the ninth international Rare Disease Day.  On and around this day hundreds of patient organizations from countries and regions all over the world will hold awareness-raising activities based on the slogan Join us in making the voice of rare diseases heard.  Learn more

March

March 20-23

MDA Clinical Conference – Arlington, VA

The 2016 MDA Clinical Conference will bring together nearly 450 neuromuscular disease clinicians, allied health professionals and scientific experts to help drive the best outcomes and optimize care for families in hometowns across America. Learn more

March 23

Global Genes Denim Dash – Aliso Viejo, CA

The second annual Local Denim Dash 5k takes place in Aliso Viejo, CA at the Global Genes headquarters.  
Learn more

April

April 7-9

Fight SMA Annual Research Conference – Alexandria, VA

FightSMA’s Annual Research Conference is a unique event bringing together experts from across the globe to advance science towards effective treatments for spinal muscular atrophy. Learn more

April 9

HELP 4 HD International 3rd Annual Symposium – Sacramento, CA

A full day of discussions about Huntington’s Disease with various professionals from the HD Community.

April 10

Huntington’s Disease Society of America Team Hope Walk – Cities Across USA

The Team Hope Walk program is HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease.  Learn more

April 23

HD Cares Inaugural HD Symposium – UC Irvine, Los Angeles, CA

Join the Huntington’s Disease Community, as well as researchers, medical students and the business community. “Hunting for Treatments in the New Millennium” will provide information about breakthrough HD research in the pipeline and helpful information about clinical trial participation. Learn more

April 30

Cure SMA Southern California Chapter Walk-n-Roll – Costa Mesa, CA

A fun filled day with a walk and then enjoy games, face painting, a raffle, refreshments and connect w/ several SMA families in Orange County. Learn more

May

Huntington’s Disease Awareness Month

The HD community has marked the month of May as Huntington’s Disease Awareness Month as a way to honor and recognize those who are affected by the disease and to create greater awareness and spread the word about HD.  Learn more

May 15

Cystic Fibrosis Great Strides Walk – Cities Across USA

Great Strides is the Cystic Fibrosis Foundation’s largest national fundraising event.  Each year, more than 125,000 people participate in hundreds of walks across the country to support the Foundation’s mission to cure cystic fibrosis.  Learn more

May 21

Angelman Syndrome Foundation Walk – Cities Across USA

43 cities across North America participate to raise awareness and to bring the AS Community together for a fun-filled day.  Learn more

June

June 2

HDSA 31st Annual Convention – Baltimore, MD

Three days of education, family, fun and comradery!  Learn more

June 11

Jensen Crawfish Boil – Harley Davidson Motorcycles, San Diego, CA

A family fun event and annual fundraiser for Myotonic Dystrophy. Learn more

June 16

Cure SMA Annual Conference – Anaheim, CA

This annual conference is the largest SMA conference in the world.  Through the conference, Cure SMA brings together researchers, healthcare professionals and families to network, learn, and collaborate.  Learn more

August

Spinal Muscular Atrophy Awareness Month

The SMA community has marked the month of August as SMA Awareness Month as a way to honor and recognize those who are affected by the disease and to create greater awareness and spread the word about SMA.  At sunset on the second Saturday of August, the SMA community lights candles to remember those who have passed away from SMA, and to honor those who are living with SMA.  Learn more

August 6

2016 Padres SMA Awareness Day – San Diego, CA

The 3rd Annual Padres SMA Awareness Day at Petco Park – a fun, family-oriented event hosted by Cure SMA.
Learn more

August 19

Surf Away SMA w/ Ricochet – San Diego, CA

Join Cure SMA & Ionis on the beaches of La Jolla Shores for a free assisted surfing experience with Ricochet, the SURFice dog and professional surfers. This event is open to all children and adults affected by SMA along with family and friends. See our 2015 event here Learn more

September

September 15

Myotonic Dystrophy Foundation Annual Conference – WA, DC

Every year, the MDF Conference provides a friendly, welcoming place for people with DM to learn from one another and hear from an incredibly diverse array of scientists, researchers, advocates and community members with one thing in common: a belief that every person with DM deserves a high quality of life, and that learning from each other strengthens us all.  Learn more

September 22

Global Genes Annual Summit – Huntington Beach, CA

For patients, caregivers, and advocates to become better equipped with actionable next steps whether you have been recently diagnosed, are building a disease community, thinking about funding early research, actively engaged in developing a treatment, or have been advocating in rare disease for decades.  Learn more


Past Community Involvement