Rob Goldstein-Mahon Email and Phone Number
Patient Advocacy at Ionis | Helping People and Organizations Change the World (posts are my own, not on behalf of Ionis) at
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Ionis Pharmaceuticals, Inc.
Rob Goldstein-Mahon's Location
Greater Boston, United States, United States
Rob Goldstein-Mahon's Contact Details
Rob Goldstein-Mahon work email
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Rob Goldstein-Mahon personal email
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Rob Goldstein-Mahon phone numbers
About Rob Goldstein-Mahon
As Patient Advocacy Director at Ionis, I leverage my 20+ years of experience in strategic communications, patient advocacy, and community engagement to advance missions that improve the health and well-being of people with rare and neurodegenerative conditions. I am passionate about incorporating the voices and needs of people with lived experience into every aspect of our work, from research and development to commercialization and access.My posts on LinkedIn are my own and are not on behalf of my employer.
Rob Goldstein-Mahon's Current Company Details
Ionis Pharmaceuticals, Inc.
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Patient Advocacy at Ionis | Helping People and Organizations Change the World (posts are my own, not on behalf of Ionis)
Rob Goldstein-Mahon Work Experience Details
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Director, Patient AdvocacyIonis Pharmaceuticals, Inc. Sep 2023 - PresentCarlsbad, Ca, UsIn this role I will lead patient advocacy and engagement efforts in support of the advancement of potential treatments for Alexander Disease (zilganersen), FUS-ALS (ulefnersen) prion disease (ION717), MECP2 Duplication Syndrome (ION440), PMD (ION356) and others.
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Associate Director, Depression FranchiseBiogen May 2023 - Sep 2023Cambridge, Ma, UsLed Biogen's Patient Advocacy efforts within its newly formed Depression Franchise and collaborated closely with our partners at Sage Therapeutics on developing a Patient Advocacy Strategy to launch ZURZUVAE (zuranolone) that incorporated the voices and needs of people with lived experience—further establishing Biogen within the mental health community by building authentic connections with PAGs, advocates, and influencers. - Collaborated with patient advocacy colleagues at Sage Therapeutics on all PAG-related giving and engagement activities as part of Alliance to co-promote ZURZUVAE in the US- Created and executed a comprehensive mental health PAG communication and engagement strategy supporting crucial ZURZUVAE milestones (pricing and access, FDA approval, DEA scheduling, post-approval patient support programs).- Grew and managed Biogen's portfolio of relationships with key national and regional mental health PAGs, including NAMI, Mental Health America, Postpartum Society International, Rural Minds, and MMHLA and corresponding chapters in core launch markets.- Created and deployed novel insight-gathering and reporting tools to track PAG engagement value generated to business through milestones (i.e., PDUFA and launch), PAG events, and conferences. -
Associate Director, Global & Us Patient Advocacy, Rare Disease FranchiseBiogen Nov 2021 - May 2023Cambridge, Ma, UsIn this role I led the creation and global coordination of Biogen strategy and engagement with organizations serving the neuromuscular community around the world, with emphasis on the SMA and ALS communities.A couple highlights include organizing global advisoy board meetings to explore PAG perspectives on the role and use of LTEs and how companies like Biogen have done in meeting community expectations about communicating EAP decision making and status.I worked directly in collaboration with the US SPINRAZA and QALSODY teams and served as an member of global product development groups (nusinersen, tofersen, BIIB105, BIIB115 and device). I was proud to be part of the team at Biogen that took QALSODY(tofersen) through the accelerated approval process at the FDA, including an Advisory Board meeting, culminating in approval on March 23, 2023.
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Senior Manager, Us Patient Advocacy (Sma)Biogen Aug 2020 - Oct 2021Cambridge, Ma, UsManaged relationship and engagement with US-based patient advocacy groups focused on serving the SMA community, including Cure SMA, MDA and others. Generated insights to support business decision making by US SMA Franchise, R&D, Global Medical and others and represented global patient advocacy on the SMA PDC and in other leadership venues. During my tenure I deepened Biogen's relationship with US-based PAGs supporting the SMA community, created new approaches to informing external stakeholders about Franchise/R&D/Medical milestones and elevated the way we share insights and outcomes resulting from engagements cross-functionally at Biogen overall.
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DirectorTen Bridge Communications Dec 2019 - Mar 2020Boston, Ma, Us● Provided strategic communications counsel to biotechnology companies regarding messagedevelopment, website design, corporate and environmental branding, risk and crisiscommunications planning and media relations.● Developed, wrote and edited content and content plans for client websites, social media,corporate and investor presentations, internal communications programs, and others.● Pitched and placed stories in local and trade media on our clients’ achievements and milestones.● Identified thought leadership opportunities for executive leadership. -
Director Of CommunicationsBoston Public Health Commission Nov 2018 - Nov 2019Boston, Ma, UsI led the Communications Office, staff (3) and priorities. This included the development of a Communications Plan including goal setting and action planning (2020-2022). I also had the pleasure of helping to develop and execute the Commission's 2019-2022 Strategic Plan, and its Community Engagement Plan (2019-2021) including promoting priorities across government agencies and visualization of action plan progress through intranet and other internal communication channels. In this role, I grew my client and project management skills from providing strategic marketing support to a handful of programs at ALS TDI to supporting more than 40 programs across six bureaus, including end-to-end production of multi-channel / multi-lingual public health message campaigns (and campaign analysis) at BPHC. Service highlights:- Improved knowledge among the general public of the Commission's work to end homelessness and address the opioid epidemic- Improved relationship with local media and other local/state governmental agencies- Developed new commission-wide marketing material review and approval processes - Acted as project manager for the creation of a new intranet and partnered with others on the development of enhanced internal communications plan and staff engagement programs - Provided media training to executive team members and others- Led the retirement/recreation of more than 50 program graphics and implementation of first-ever brand standards- Established a culture of using analytics to make informed decisions regarding effectiveness and message recall of public awareness campaigns and general message marketing through all social, digital and other channels -
Chief Marketing Officer & Vice President Of Als Community EngagementAls Therapy Development Institute Nov 2017 - Nov 2018Everything I did before, but spent more time bringing together people with ALS and biotechnology and pharmaceutical companies. Focused on creating community engagement programs, educational materials, and connecting patients, caregivers and effected families to decision makers on trial design, product development, grant making, etc. Additional oversight on communicating progress in ALS research more directly to patients, donors and the public and developing relationships with corporations interested in being part of health care solutions with global impact.
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Vice President Of Marketing, Communications And DevelopmentAls Therapy Development Institute Jun 2004 - Nov 2017I worked for the world's first and leading nonprofit biotech devoted to the discovery and development of effective treatments ALS, commonly known as Lou Gehrig's disease. Job entailed working closely with the board and senior management to develop and execute a myriad of promotional and marketing projects, attracting and identifying KOLs, pharmaceutical partners and individual fundraising leads. I saw myself as a steward of the Institute's mission and my job overall was to apply our model to make world a better place. I pride myself on having been available to patients the world over and motivating staff to bring to life in our work our institute’s values: love, entrepreneurism, honesty and patients today.Also, I led the Executive Team in development of 3 year strategic plan aligning marketing and fundraising goals and processes with science and R&D goals - leading to my appointment as CMO and handing over fundraising team to newly hired VP.At, ALS TDI I directly managed between 3-16 people and several teams of staff and volunteers. I set goals, tracked performance and coached staff on success. In my previous positions I worked on the Driving 4 Life campaign team, ultimately becoming Brand Manager and Special Assistant to the Founder with whom I worked closely with to grow fundraising activities, create new programs helping to triple its annual income three-three fold to nearly $1.5 million in 2006. I have also developed several other high successful programs including the 4ALS Awareness Campaign with Major League Baseball in 2010, the Young Faces of ALS Campaign in 2011, and Ales for ALS in 2013. Steering Committee and Other Board Service:MassBio Marketing & Communications Working Group Co-Chair (2013-2015)MassBio Patient Advocacy Summit Steering Committee Member (2014-2018)Volunteer Board ServiceInternational Alliance of ALS/MND Organizations (Delegate 20019-2016, Board Member 2016-2018)Milford Medicinals (later Sira Naturals) (2014-2017)
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Freelance Production AssistantWmur-Tv Jan 2004 - Jun 2004Worked as production assistant during the New Hampshire 2004 presidential primary season. Newscast camera operator using standard studio floor and jib cameras, satellite truck experience, Telepromter operations, video/audio editing and on-air feeding experience. Logged nearly 200 hours on in-studio and field operations experience.
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Sous ChefPoint Sebago Resort May 1996 - Sep 2003Seasonal, May - NovemberSous Chef for gourmet seafood and American fare lakeside restaurant at family resort in Maine. Supervised staff kitchen and wait staff of more than 30, designed daily menu and specials, participated in day-to-day management of busy restaurant and two satellite operations.Started with company as dishwasher during the summer of 1996. Promoted each summer to position of greater of greater responsibility. Apprenticed under a number of award winning chefs from all over New England.
Rob Goldstein-Mahon Skills
Fundraising
Marketing
Project Management
Public Relations
Strategic Planning
Management
Event Management
Social Media
Public Speaking
Research
Nonprofits
Product Development
Marketing Communications
Strategy
Marketing Strategy
Leadership
Nonprofit Organizations
Rob Goldstein-Mahon Education Details
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Umass BostonPublic Affairs -
University Of MaineMass Communication/Media Studies
Frequently Asked Questions about Rob Goldstein-Mahon
What company does Rob Goldstein-Mahon work for?
Rob Goldstein-Mahon works for Ionis Pharmaceuticals, Inc.
What is Rob Goldstein-Mahon's role at the current company?
Rob Goldstein-Mahon's current role is Patient Advocacy at Ionis | Helping People and Organizations Change the World (posts are my own, not on behalf of Ionis).
What is Rob Goldstein-Mahon's email address?
Rob Goldstein-Mahon's email address is rg****@****als.net
What is Rob Goldstein-Mahon's direct phone number?
Rob Goldstein-Mahon's direct phone number is +163126*****
What schools did Rob Goldstein-Mahon attend?
Rob Goldstein-Mahon attended Umass Boston, University Of Maine.
What skills is Rob Goldstein-Mahon known for?
Rob Goldstein-Mahon has skills like Fundraising, Marketing, Project Management, Public Relations, Strategic Planning, Management, Event Management, Social Media, Public Speaking, Research, Nonprofits, Product Development.
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