Periodic Paralysis Association

What Periodic Paralysis Association does

The Periodic Paralysis Association (PPA), founded in 1997 and registered as a 501(c)(3) nonprofit public benefit corporation in Florida, is a patient advocacy organization serving individuals with periodic paralysis and related skeletal neuromuscular channelopathies (Hypokalemic PP, Hyperkalemic PP, Normokalemic PP, Paramyotonia Congenita, Potassium Aggravated Myotonia, Thyrotoxic PP, Andersen-Tawil Syndrome). Its core offerings are educational rather than technological: a documentary video series on YouTube, free live webinars, an annual conference (2026 scheduled for Orlando, FL), an 'Ask The Experts' medical question panel led by Dr. Steven Cannon, a Pledge of Advocacy program, and downloadable episode and medication trackers. The organization's distribution is primarily digital (website, social media) with annual in-person conference touchpoints, and it extends its reach through partnerships with NORD (RareCare patient assistance referrals), Invitae (no-charge genetic testing panel), and pharmaceutical companies with approved PP therapies.

The PPA is governed by a volunteer board (President Cienna Ditri, VP Holly Benson, Treasurer Heidi Ditri, Secretary Teresa Cochran, plus Strategic Planning, Patient Advocacy, and Media Specialist roles) and operates with 11-50 staff. Its revenue model relies entirely on donations and grants: individual contributions via community fundraisers (e.g., Bob Sokol Golf Outing, Fraternal Order of Eagles activities), foundation grants (Levitt Research Foundation), NIH National Libraries of Medicine infrastructure support, and pharmaceutical sponsorships (Strongbridge Biopharma, Novartis Corporation). All services are provided free of charge to end users; no subscription, licensing, or transactional revenue streams exist.

The organization's competitive positioning rests on disease-specific depth in a rare-disease niche where patient populations are inherently small and awareness among general practitioners is limited. Its value proposition centers on reducing misdiagnosis and treatment delay, providing science-based resources, and convening a community that connects patients with specialized medical expertise. The PPA does not develop proprietary technology products and has no AI/ML capabilities, APIs, or integrated platforms — its competitive moat is content depth, community density, and clinical advisory credibility, not technology.

Name

Periodic Paralysis Association

Legal name

Periodic Paralysis Association

Website

https://periodicparalysis.org

Company type

Private

Founded year

1997

Operating status

Operating

Headcount range

11–50 employees

Short description

The Periodic Paralysis Association is a 501(c)(3) nonprofit founded in 1997 that provides free education, advocacy, and community support to patients with periodic paralysis and related skeletal neuromuscular channelopathies worldwide, funded by donations and grants.

Ownership category

akta.pro rank

Headquarters

HQ city

Willow Grove

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Individual Donations: The PPA receives donations from private individuals, including proceeds from events like the annual Bob Sokol Golf Outing organized by the Sokol family, and individual fundraising efforts by members approaching local organizations.
2. Organizational Funding: Funding received from pharmaceutical companies (Strongbridge Biopharma, Novartis Corporation), research foundations (Levitt Research Foundation), and government sources (NIH National Libraries of Medicine supporting web servers and site development).

Go-to-market motion1 record

Distribution channels3 records

Marketing channels7 records

Core offering

The Periodic Paralysis Association (PPA) is a 501(c)(3) nonprofit charitable organization that provides education, awareness, advocacy, and community support for individuals living with periodic paralysis and related skeletal neuromuscular channelopathies. It delivers free resources including a documentary video series, educational webinars, an Ask The Experts medical panel, annual conferences, advocacy pledge programs, and episode-tracking tools, while partnering with NORD RareCare to provide patient financial assistance.

Product overview

The Periodic Paralysis Association is a nonprofit charitable organization offering a patient-focused platform providing educational resources, community support, and advocacy tools for individuals living with Periodic Paralysis and related skeletal neuromuscular disorders. The core offerings include a documentary video series (DocuSeries), free educational webinars, annual conferences, an 'Ask The Experts' medical question panel, and advocacy programs. Supporting resources include the PPA Pledge of Advocacy, a Periodic Paralysis Episode Tracker, and the Keveyis Daily Tracker for medication management. The association also partners with NORD RareCare to provide patient financial assistance programs. The organization serves patients with various PP types including Hypokalemic, Hyperkalemic, Normokalemic, Paramyotonia Congenita, Potassium Aggravated Myotonia, Thyrotoxic Periodic Paralysis, and Andersen-Tawil Syndrome.

Differentiator

Problem solved

Functional benefit

Products and services

• DocuSeries (Video Documentary Series) A documentary video series featuring three programs: 'A Rare Adventure' (patient interviews on living with Periodic Paralysis), 'You're Not Alone' (support for undiagnosed individuals), and 'Ask the Expert!' with Dr. Steven Cannon answering patient questions. Free to view; targets patients, families, and caregivers.
• Educational Webinars Free live educational webinars on periodic paralysis topics (e.g., therapeutic horseback riding, anesthesia safety, daily living), delivered by medical experts to patients and caregivers.
• PPA Conference Annual in-person conference bringing together patients, medical experts, and researchers for education, networking, and advocacy. The 2026 conference is scheduled for October 10-11 in Orlando, FL.
• Ask The Experts Panel A question submission service connecting patients with medical experts including Dr. Steven Cannon (Neurologist and Muscle Physiologist) for answers about Periodic Paralysis diagnosis, treatment, and management.
• PPA Pledge of Advocacy An advocacy commitment program where members pledge to stay informed about periodic paralysis information and serve as advocates for themselves and the PP community.
• Primary Periodic Paralysis Episode Tracker A downloadable tracking tool that allows patients to monitor and record Periodic Paralysis episodes, including triggers, symptoms, duration, and recovery methods.
• Keveyis Periodic Paralysis Daily Tracker A downloadable PDF daily tracker for patients using Keveyis (dichlorphenamide) medication to monitor symptoms and treatment outcomes.
• NORD RareCare Patient Assistance Referral partnership with NORD RareCare that connects patients to Co-Pay Assistance, Premium Assistance, and Medical Assistance programs to help obtain life-sustaining medications.

Quantifiable outcome

• NORD RareCare recognition for patient assistance programs including Co-Pay Assistance, Premium Assistance, and Medical Assistance

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Three partnerships are on record, tiered major and minor.

• InvitaemajorStrategic or Co-development PartnerInvitae offers a no-charge periodic paralysis gene panel testing program in partnership with PPA. This enables patients to access genetic testing for diagnosis at no cost, supporting the diagnostic journey for periodic paralysis patients.
• NORD (National Organization for Rare Disorders)majorStrategic or Co-development PartnerPPA has been recognized by NORD in their RareCare program. NORD provides assistance programs including Co-Pay Assistance, Premium Assistance, and Medical Assistance to help patients obtain life-sustaining medications. Contact: 877-291-7756.
• SpiritHorseminorStrategic or Co-development PartnerSpiritHorse is an organization providing therapeutic horseback riding for children with disabilities. PPA partnered with SpiritHorse to offer free webinars on therapeutic horseback riding for children with periodic paralysis and sells PPA Ponies T-shirts with a portion of proceeds funding SpiritHorse scholarships.

Scale indicators1 record

Recent moves6 records

Expansion highlights5 records

Direct peers

• National Organization for Rare Disorders (NORD): Umbrella rare disease advocacy organization that already recognizes PPA in its RareCare program. Operates the same patient advocacy, education, and assistance model at a broader (all rare diseases) scale, making it the closest structural peer.
• Cure SMA: Patient advocacy organization for spinal muscular atrophy providing education, research funding, and community support. Comparable in mission, structure, and reliance on pharma sponsorship and disease-specific patient resources.
• Parent Project Muscular Dystrophy (PPMD): Rare disease patient advocacy nonprofit (Duchenne) led and structured similarly to PPA, with educational resources, advocacy campaigns, pharma partnerships, and annual conferences centered on a specific genetic neuromuscular disorder.
• Myasthenia Gravis Foundation of America: Patient advocacy nonprofit focused on a specific rare neuromuscular disorder, mirroring PPA's disease-specific niche model, educational webinars, patient communities, and research support activities.
• Charcot-Marie-Tooth Association: Disease-specific rare neuromuscular patient advocacy group offering education, community, and research funding. Highly comparable operating model to PPA including expert panels, patient resources, and annual conferences.
• The Myositis Association: Advocacy organization for inflammatory myopathies, a related rare skeletal muscle disorder group. Mirrors PPA's education, expert Q&A, and community conventions directed at a rare muscle disease population.

Broad incumbents

• American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM): Professional medical society serving neurologists and physiatrists diagnosing neuromuscular disorders like periodic paralysis. Provides CME, guidelines, and physician education that complement PPA's patient-facing resources.
• EveryLife Foundation for Rare Diseases: Rare disease policy and advocacy nonprofit that overlaps with PPA on federal legislative advocacy, newborn screening, and access to therapies, but operates at a population-wide rare disease level rather than a single disorder.
• Muscular Dystrophy Association (MDA): Large established neuromuscular disease advocacy organization funding research, clinical care, and patient support. Overlaps with PPA on neuromuscular patient education and advocacy but operates with a much broader disease mandate and bigger budget.

Regional players

• Muscular Dystrophy UK: UK-based neuromuscular disease advocacy organization with mission, programs, and operating model closely parallel to PPA, but serving primarily a UK patient audience rather than US/global.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/channel/UCzveNIQmts1m8BCx4UNaI5Q
• Facebookfacebook.com/periodicparalysisassociation
• Instagraminstagram.com/periodicparalysis

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles7 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Periodic Paralysis Association