Author Archives: MOFF

MOFF is pleased to welcome Neil Clayton to the MOFF team as Development Coordinator and Strategic Thought Partner. Neil joins MOFF after working in law enforcement in San Luis Obispo County for over 20 years. During his law enforcement career, Neil volunteered with law enforcement-related non profits at both the local and state level. Neil recently retired from the SLO County District Attorney’s Office. 

Neil supports MOFF’s mission and shares our organizational values having experienced the loss of a loved one to ALS in 2015. Driven by his experience with the challenges of caring for a loved one battling this disease locally, Neil is determined to help families living on the Central Coast find and maintain the medical care they need as well as do everything possible to support finding a cure.

In his spare time, Neil enjoys hiking, fishing and traveling with his wife Jennifer and their two children.

Welcome to the 2023 Hike x Brunch! This is the 10th year the MOFF community has hiked to remember Martha Olson-Fernandez, all those living with ALS, and all those who have succumbed to the disease. Over the years, the event has evolved into an ALS awareness event and has welcomed participants from CA, AZ, NY, OR, TX, and even the UK!

Hike: February 25 & 26: The hike portion of the event will be scaled back in SLO this year (the Fernandez Family will not be present because they are planning a wedding), but everyone is still encouraged to hike to raise awareness of ALS! Flowers will be at the base of Felsman Loop at the Patricia Street Trailhead of Bishop’s Peak on Saturday. Martha’s memorial bench is located on the west side of the loop. Don’t forget to tag @moff.cureals on Instagram

Happy Birthday, Martha! (24-Feb)

National Chowder Day is on Saturday, February 25!

Brunch: MOFF has been selected as Splash Café’s local charity partner! MOFF will receive 10% of chowder sales on National Chowder Day! National Chowder Day will be celebrated on February 25th & 26th at both Splash Café locations (Pismo Beach and San Luis Obispo). The MOFF team has worked with Splash for almost every single Hike x Brunch. We are incredibly grateful for their partnership and for the opportunity to highlight the ALS Community presence on the Central Coast.

Learn more about the collaboration and how to support on the Splash Café website

NATIONWIDE SHIPPING INSTRUCTIONS BELOW

Order chowder for NATIONWIDE shipping on the Gold Belly website. Use discount code SPLASH10. Valid Friday (24-Feb)-Monday(27-Feb) on orders over $50.

ALS hits hard. No question, whether you are living alone, a single father, a mother of three, a grandparent, a college student, a professional athlete… life gets flipped, and your priorities shift.

Some people choose to live privately with their disease. Others become activists in their own communities. Still others fight to position themselves at the front door of pharma companies, research institutions, and regulatory bodies, advocating for sustainable change.

Sandy Morris (July 2, 1966 – August 28, 2022) was one of those individuals who chose to make a ripple in how things are currently done to change the ALS experience for those individuals diagnosed with ALS in the future. She did not do it alone, she had I AM ALS (the institution Brian and Sandy Wallach created), as one of her platforms. She worked with fellow powerhouse ALS advocates: Gwen, Phil, Michael, Cathy, and Bob. In the ALS community, she was a real-life superhero. Her obituary and her I AM ALS profile do a great job of describing her activism and positive relentlessness in more detail.

I was privileged to join the I AM ALS community trials group in 2020, and got to hear Sandy’s fireball personality push back on big pharma’s regimented processes. She and the rest of the group emphasized the PaCTD rating criteria  they had developed along with the FDA guidance for the industry they had influenced. Her usage of the word “no” and “we are not jellyfish” forced the FDA and companies developing drugs for ALS to get creative, and listen to the patient perspective. This resulted in the development of more humane clinical trials with smaller placebo groups and less lengthy trial durations. An example of their impact is the Healey Platform Trial.

Sandy was slightly younger than Martha (born in 1966 instead of 1963) and is survived by her three children. Her legacy lives on in publications such as in The Nation and in the real changes she and her colleagues at I AM ALS created and are continuing. A clear example of their impact is the BioCentry podcast that features Senator Richard Bill. If you skip to minute 12:40 you can hear Sandy’s words spoken by the MC:

“What patients are saying is: it’s not enough, and it’s not fast enough…There is a sense that the FDA isn’t really in a position to be the driving force behind solving the problems of developing new therapies for neurodegenerative diseases, particularly those that don’t have therapies, really good therapies, like ALS. They need to be part of the equation but they don’t need to be the quarterback.”

The quarterback is the people living with ALS. Sandy Morris effectively and clearly navigated that field. Now it’s our job to keep that momentum going.

THANK YOU, SANDY. THANK YOU, I AM ALS.

November 6, 2022

*** Sammi completed the NYC Marathon on Nov 6, 2022. Her race time was 4:33:35. She fundraised $20,050.00 for he Team Challenge ALS team. Awesome job, Sammi! 

Team Challenge ALS

On November 6th,  Samantha (Sammi) Fernandez will run the New York City Marathon. The 26.2 mile race will take runners through all five boroughs of New York City, starting on the Verrazano–Narrows Bridge on Staten Island and passing through Brooklyn, Queens, Manhattan, and the Bronx, before finishing in Central Park. So iconic. So Sammi.

Sammi is a San Luis Obispo, CA native, and Martha’s niece and goddaughter. She is running with the Team Challenge ALS team hosted by the ALS Association Greater New York Chapter (ALSA NY). View her marathon page here.

The Martha Olson-Fernandez Foundation granted $10,000 to ALSA NY to support their efforts in ALS advocacy and patient care in honor of the NYC Marathon event.

Check out the MOFF instagram for pictures of Sammi and race updates!

Good luck to all the Team Challenge ALS runners!

Marathon’s are exhilarating, exhausting and require incredible discipline. Show some support by donating to the ALS Association NYC Chapter via the red button below. MOFF will be in NYC to support Sammi on her journey in November as will half of San Luis Obispo. Can’t wait to see everyone there!

Martha is proud of you and will be with you the whole course. Never give up! This journey is #1 for Sammi and #2 for everyone living with ALS who needs the motivation to get up and face the day.

We love you, Sammi!

The Martha Olson-Fernandez Foundation Annual Hike x Brunch

  Saturday, February 26, 2022 and Sunday, February 27, 2022

Thank you to all donors, MOFF hikers, random SLO hikers, silent auction donors and winners, and social media giveaway participants and winners!

Traditional Hike: Over 50 MOFF associated hikers completed either Felsman Loop or Bishops Peak in SLO and brought roses either to the peak or to Martha’s memorial bench. The MOFF team was present at the trailhead from 9:00 AM – 11:30 AM PT on Saturday and Sunday. Many people who were initially unfamiliar with MOFF also opted to take a rose with them on their hike to help us raise awareness of ALS. It was a beautiful weekend to do so!

Virtual Hike: Over 60 Instagram/Facebook users tagged @moff.cureals and hashtagged #cureals #nevergiveup in their hiking stories! It was a tough competition, but in the end, Nancy Walter and Courtney Crawford won the social media giveaway! Thank you to all of our virtual participants for raising awareness in your communities! MOFF supporters hiked in NY, CA, AZ, TX, HI, MX and the UK! Visit the MOFF instagram and view these stories in our highlights section.

Other Ways to Participate

Silent Auction: Congratulations to our Silent Auction winners! Participants were represented in 5 different states!

Donate: Together we raised over $15,000 to support MOFF’s ALS Patient Care and Research Programs! Way to go!

Why We Hike

This event honors the life of Martha Olson-Fernandez and every other individual who can no longer hike due to the effects of a neurodegenerative disease. Martha was a well-known SLO community member and an avid hiker when she was diagnosed with ALS in 2011. Her memory lives on through this MOFF community and her family and friends. It is through Hike x Brunch event that we are able to reflect on the lives of the incredible individuals the SLO community has lost to ALS and send strength to those who are living with the disease today.

Thank you to the SLO families that have participated in the MOFF Hike x Brunch since the 1st Annual in 2015 and to all of you who have joined us along the way!!

The ThinkALS tool was developed by the ALS Association to assist clinicians in the ALS differential diagnosis process. On average, ALS takes one year from time of onset to a definitive diagnosis. The obvious reason a rapid diagnosis is not possible is that a diagnostic biomarker for ALS does not yet exist. That is to say, you cannot run a lab test on a nasal swab and detect ALS, but rather every other condition must be ruled out first. Conditions commonly confused with ALS include spinal muscular atrophy, peripheral neuropathies, infections such as Lyme disease and hepatitis C that cause muscular weakness, Parkinson’s Disease, and behavioral variants of frontal temporal dementia. If you are interested in reading more about the ALS diagnostic delay and potential solutions, we encourage you to read the previous MOFF blogs listed at the bottom of this post.

MOFF will be distributing this ThinkALS tool to primary care practices in 2022 in an effort to identify people living with ALS earlier and refer them to an ALS specialist (neurologist) as soon as possible.

Call to Action: Print and share, or email this tool to your primary care physician’s office. Start a conversation about ALS with your health care provider. The more we talk about it, the more awareness we will raise, and the earlier ALS patients can get the medical team they need.

Click the image above to access the PDF version

For further information on the ThinkALS tool, visit this webpage.  

A Solution to the ALS Diagnostic Delay

1 in 300

Who is Don Woodward?

Don Woodward is a legendary member of the San Luis Obispo, CA community. He was an incredibly talented football player, golfer, and businessman. His name is well known in the California car industry where he started his business career at one of his grandfather’s dealerships, Lompoc Honda. Don’s name is one that brings a smile to everyone’s face that knew him and “f*#k ALS” energy to those who understand he was taken when he had much more life to live. Don’s wife at the time, Maggie Woodward, selflessly cared for Don throughout his ALS journey. She remains a pillar of strength and provided Larry Fernandez valuable guidance when Larry was going through his caretaking experience with Martha. The burden of ALS on families is palpable. The Woodward and the Fernandez families had everything you need to make the most out of the time you have left: love, humor, and Don and Martha.

Friends of Don golf in the Martha Olson-Fernandez Foundation (MOFF) Annual Golf Tournament and the “Woody” tournament at the San Luis Obispo Country Club each year. His memory truly is kept alive by his family, friends, and the golfing community. His friends, John Ronca and Scott Dierks, work closely with MOFF. John has served on the MOFF board for the past 2 years.

Why does the Don Woodward ALS Research Grant exist?

The grant exists to connect the golfers and sponsors that participate in the MOFF Annual Golf Tournament fundraiser directly to an ALS lab. When Martha outlined MOFF’s mission in 2012, she wrote on a piece of paper that “All funds go to research.” This grant is our way of making sure the MOFF community stays rooted in our mission and that our donors feel that connection to the research projects that are creating potential therapies for this brutal disease.

What labs have received this grant money ($10,000) in the past?

2019: USC Ichida Lab for ALS (Dr. Justin Ichida)

2020: Duke University ALS Lab (Dr. Richard Bedlack)

2021: The ALS Cure Project at Lawrence Livermore Labs (Mike Piscotty)

How do I apply to have my lab considered to be the recipient of the Don Woodward ALS Research Grant?

Email moffoundation@gmail.com and ask for our request for proposals (RFP) application. The deadline for proposal submissions is July 1st each year. Grants winners will be announced in September and grant funding will be distributed in February of the following year.

How do I become the Don Woodward ALS Research Grant Sponsor?

MOFF encourages any individual or company to become the Don Woodward ALS Research Grant Sponsor. Sponsors will have the opportunity to tour the ALS research lab that is selected and discuss the project with the researcher. Sign up to receive notifications from MOFF here. MOFF will announce the opening of registration for our annual golf tournament event in July. Once you receive notification of the golf tournament event, simply sign up via our event platform that will be listed in the email. Alternatively, email moffoundation@gmail.com and announce your intention to be the sponsor.

A HUGE special thanks goes out to Larry Fernandez who has been the Don Woodward ALS Research Grant Sponsor for the past 3 years. Thank you, Larry for your continued support!!

Publication Update: It is with great sadness that we share Ken Brenner passed away on February 14, 2021. He was surrounded by his loving family and in the comfort of his home. The article written below was authored before his passing. 

Ken Brenner is an incredibly talented artist living with amyotrophic lateral sclerosis (ALS). His talents hardly stop at art. An athlete, successful Silicon Valley banker, husband, and father of 3 children and grandfather of 2, Ken has lived a full life thus far, and has much more to live.

Ken was diagnosed with ALS in late 2020. The diagnosis and his disease progression sent shock waves through the Brenner family. It forced Ken to retire from a long banking career which he was not ready to be done with. His wife also retired, and their children moved back to CA from New York City to be with their father. Needless to say, all of their lives were uprooted and their trajectories changed. That’s just what ALS does.

Ken’s retirement plan was to focus on his art and to show the world his artistry. When ALS happened, he still found a way to make painting work.  “Art gives me something to focus on,” Brenner said. “I lose myself; I don’t think about my issues. So it’s sort of a mental break.” As time elapsed, he had trouble holding a brush, but continued to paint with his fingers. His paintings showcase his creativity, personal exploration, disease progression, and his will to face the joy and the struggle of each new day.

Ken’s oil paintings are well recognized and sought after by well-established private and corporate art collectors. In 2020, his path crossed with a younger latino artist, Octavio Molina, who had faced his own set of challenges growing up in Mexico before immigrating to the US. The two formed an incredibly special bond and have helped each other through their collaborating on paintings in 2020-2021. “He always tells me he’s good at framing my chaos,” Brenner said of Molina in a joint interview with ALS News Today.  When it comes to ALS, there is definitely a lot of chaos.

The Brenner Family and The Fernandez Family were serendipitously connected through their mutual friend, Alexis Schwartz. Together, they are fundraising for the Expanded Access Platform (EAP) Program at The Sean Healey Center for ALS. Their fundraising goal is $30,000.00. This is the cost to put 3 individuals living with ALS through the EAP program for 1 year.

Donate to the EAP at MGH today via the link below. Learn more about the expanded access protocol programs and why they are so important to ALS patients here.

01-Nov-21 Update: We reached our goal! $30,000 will be donated to the MGH Expanded Access Protocol Program in Ken’s name in February of next year (2022).

 BUY KEN BRENNER ART:

View Ken’s art via the links below and contact Jordan Brenner at jordan@100collective.com.

• https://www.kenbrennerart.com/forever (Paintings done in 2020 when Ken could still hold his brushes)
• https://www.kenbrennerart.com/connect (Most recent collaboration with Octavio Molina)

Ken Brenner’s article in ALS News Today ALS News Today

The Martha Olson-Fernandez Foundation will donate $30,000 from their upcoming 9^th Annual Golf Tournament (02-Oct) to the Expanded Access Protocol (EAP) Program at the Healey Center for ALS at Massachusetts General Hospital. Here’s why:

Amyotrophic lateral sclerosis (ALS) is a fatal, neurodegenerative disease that affects roughly 9 out of a 100,000 people in the United States at any given time¹. Put in more relatable terms, the average person has a 1 out of 300 chance to develop ALS in their lifetime ².

There are currently only 3 FDA approved therapies indicated in the treatment of amyotrophic lateral sclerosis (ALS). These drugs, RADICAVA^®, NEUDEXTA®, and Rilutek fall short of providing significant, disease modifying effects for those living with the disease. Those individuals that seek a more significant therapeutic benefit and a better chance at survival enroll in clinical trials. There are currently 86 global clinical trials that are currently recruiting patients³. The caveat is that nearly 60% of ALS patients fail to qualify for clinical trial enrollment due to the rigid inclusion/exclusion criteria written into each trial protocol^.4  Expanded access, also called “compassionate use,” provides a pathway for patients to gain access to investigational drugs, biologics, and medical devices used to diagnose, monitor, or treat patients with serious diseases or conditions for which there are no comparable or satisfactory therapy options available outside of clinical trials.⁵

2020 statistics provided by the Golden West Chapter of the ALS Association revealed that there were just over 90 patients living with ALS on the Central Coast. These patients, right in our backyard, are dying. Their only chance is experimental therapies. The MGH Expanded Access Protocol (EAP) provides just that. Since the second quarter of 2018, The MGH EAP has supervised 133 ALS patients receiving access to therapies not yet approved by the FDA. These patients have seen therapeutic benefits and their stories of function recovery are inspiring.

Some of the drugs the EAP at MGH allows access to are currently being tested in the Healey Platform Trial: Verdiperstat, CNMAu8, and Pridopidine. All of these drugs are administered under the supervision of an interdisciplinary team of doctors and longitudinal data is collected for research purposes to assist with therapy validation and categorization.

This fundraising effort is a partnership between the Ken Brenner Family and the Martha Olson-Fernandez Foundation. To date, they have raised $6,900.00 and they need your help to reach their $30,000 goal. Since it costs $10,000 to provide 1 patient access to therapy for 1 year, this total will fund 3 patients.

NEVER GIVE UP

Donate to the MGH EAP Program today.

1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6567553/
2. https://www.neurologylive.com/view/an-overview-of-causes-and-risk-factors-for-als
3. https://clinicaltrials.gov/ct2/results?cond=ALS&Search=Apply&recrs=a&age_v=&gndr=&type=Intr&rslt=
4. https://alsnewstoday.com/news-posts/2019/01/21/new-eligibility-criteria-needed-to-improve-als-trial-outcome/
5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5443564/

Thank yous, tournament prizes, and silent auction prizes will be sent to the event participants throughout October. 

COVID-19 Notice: We are excited to see everyone out on the course! In order to keep everyone safe, we are encouraging that all of our golfers, volunteers and visitors have negative Covid-19 tests. If you are experiencing any symptoms we respectfully request you refrain from attending.

The 9th Annual Martha Olson-Fernandez Foundation Golf Tournament has ended.

Special thanks to all the golfers, sponsors, and volunteers that made this event possible. 

Golfer and Volunteer FAQs

Q: Where is the tournament?

 A: Cypress Ridge Golf Course in Arroyo Grande, CA

Q: When is the tournament?

 A: Saturday, October 2, 2021

Q: When does check-in open?

A: 9:00 AM

FYI There will be a putting competition happening during check-in.

Q: When does the tournament start? 

          A: At 10:00 AM. Please arrive no later than 9:45 AM if possible!

          Q: Will breakfast and lunch be provided?

A: Yes! Coffee and breakfast burritos will be available at check-in and DePalo and Sons will be providing lunch. Please let us know if you would like a vegetarian option!

Q: What course games will be available? 

A: Closest to the Pin, Beat the Pro, Longest Drive, Hole-in-One, and more!

Q: How will the winners be determined? 

A: The top 2 scoring teams out of Net scoring category and top 2 teams out of the Gross scoring category will be selected at winners! There is also a hackers prize.

Q: Will there be an awards ceremony this year? 

A: No. Winners will be announced via email, on this webpage, the MOFF instagram account, and the MOFF FB account.

Q: Can I golf next to my friend’s foursome? 

A: Yes! Call or text Victoria at 805 458 9673

Click the registration form image below for more tournament details.

Welcome to the Martha Olson-Fernandez Foundation Fiesta Dinner

This event is held each year to honor the winner of the Fiesta Raffle at the Martha Olson-Fernandez Foundation (MOFF) Golf Tournament. The winner of this year’s dinner was: Sean St. Dennis! All raffle earnings were donated to the ALS Association Golden West Chapter and were earmarked for patients living on the Central Coast of California. This funding is incredibly important. ALS can cost a single family up to $200,000 of out of pocket expenditures a year.

We are honored to host Sean and Patty St. Dennis and their guests. We hope everyone has a wonderful evening!

Victoria Humphrey will be joining the MOFF team this month! We are very excited to welcome her into our event planning efforts as we work to raise money to fund ALS research and patient care initiatives! Read a brief interview with Victoria below.