Photosensitivity

Playing For Frances: Playing for Change Foundation Hosts a Night of Music and Unity in Support of 12-Year-Old Frances Gourley

Retrieved on: 
Tuesday, March 12, 2024
Epilepsy, DHDDS, Change, Confusion, Asa Taccone, Photosensitivity, Food, Migraine, Nausea, Music, FDA, Parent, ASCAP

LOS ANGELES, March 12, 2024 (GLOBE NEWSWIRE) -- On March 9, 2024, Playing For Change Foundation (PFCF), an esteemed foundation for amplifying local impact zones through music and community support, hosted a private benefit and concert in support of 12-year-old Frances Gourley to help raise money to find a cure for DHDDS. Frances, the daughter of John Gourley and Zoe Manville of the band Portugal. The Man, is battling the one-in-a-billion genetic disease, DHDDS. The special evening took place at a private residence in Venice, CA, and hosted many artists, musicians, and supporters of PFCF and Frances Changed My Life. Notable attendees include Paul Williams, the songwriter and president of ASCAP, Roy Choi, celebrity chef, and Jónsi, the lead singer and guitarist of Sigur Rós. This spectacular night featured an intimate performance by Portugal. The Man as well as surprise performances by Jeff Bhasker, Redray Frazier, and Asa Taccone.

Key Points: 
  • Frances, the daughter of John Gourley and Zoe Manville of the band Portugal.
  • The special evening took place at a private residence in Venice, CA, and hosted many artists, musicians, and supporters of PFCF and Frances Changed My Life.
  • PFCF is celebrated for supporting music education programs for children in areas that are rich in cultural traditions but limited in economic resources.
  • The foundation actively engages in providing essential services like food and hygiene supplies, especially in areas where these necessities are scarce.

Research case series presents food as medicine as a potential treatment for lupus and other autoimmune diseases

Retrieved on: 
Tuesday, March 19, 2024
Arthralgia, Series, Brain, Xerostomia, Face, Malar rash, Kidney, Lupus, Photosensitivity, Pleurisy, Inflammation, Patient, Raw foodism, Tissue, Research, History, Grit, Hair loss, Food, Seed, MD, Quality of life, Woman, Arthritis, Chronic pain, Skin, Water, Sunlight, Scalp, Immune system, Grain boundary strengthening, Frontiers, RRP, Fatigue, Swelling, Flax, Autoimmune disease, Nut, Medicine, Dietary supplement

ST. LOUIS, March 19, 2024 /PRNewswire-PRWeb/ -- A new research case series published in Frontiers in Nutrition presents food as medicine as a potential treatment for autoimmune diseases, describing three patients with chronic autoimmune disease who showed remarkable improvement after following a predominantly raw dietary pattern high in cruciferous vegetables and omega 3 fatty acids.

Key Points: 
  • ST. LOUIS, March 19, 2024 /PRNewswire-PRWeb/ -- A new research case series published in Frontiers in Nutrition presents food as medicine as a potential treatment for autoimmune diseases, describing three patients with chronic autoimmune disease who showed remarkable improvement after following a predominantly raw dietary pattern high in cruciferous vegetables and omega 3 fatty acids.
  • All three women reported that nearly all their symptoms of both diseases resolved after just four weeks of making the dietary changes.
  • "My hope is that these cases generate greater recognition, making patients and clinicians aware of food as medicine as a treatment option for systemic lupus erythematosus and Sjögren's syndrome.
  • This case series also reflects the immediate need for more research into dietary changes as a potential treatment strategy for autoimmune disease."

Playing For Change Foundation Announces Playing for Frances Iconic Artist Charity Auction

Retrieved on: 
Friday, March 1, 2024
Music, Sphere, LOS, Change, FDA, DHDDS, Parent, Nausea, DSM-IV codes, Confusion, Food, Migraine, Photosensitivity, Epilepsy, Research, Kid A Mnesia, Lovebox, Auction

LOS ANGELES, March 01, 2024 (GLOBE NEWSWIRE) -- Playing For Change Foundation (PFCF), esteemed for amplifying local impact zones through music and community support, is rallying behind 12-year-old Frances Gourley. Frances, the daughter of John Gourley and Zoe Manville of the band Portugal. The Man, is battling the one in a billion genetic disease, DHDDS. PFCF is proud to host the Playing For Frances charity auction, which features collectible items and one-of-a-kind experiences donated directly from legendary artists and celebrities, with proceeds going to help find a cure for DHDDS.

Key Points: 
  • PFCF is proud to host the Playing For Frances charity auction, which features collectible items and one-of-a-kind experiences donated directly from legendary artists and celebrities, with proceeds going to help find a cure for DHDDS.
  • In 2021, Frances was diagnosed with DHDDS, an ultra-rare illness shared by only 70 people worldwide.
  • To help raise money to support the fight against DHDDS, Playing for Frances includes an epic auction featuring items given directly by iconic artists and celebrities.
  • The foundation actively engages in providing essential services like food and hygiene supplies, especially in areas where these necessities are scarce.

Disc Presents Positive Updated Results from Phase 2 BEACON Study of Bitopertin and Other Programs at the 65th American Society of Hematology (ASH) Annual Meeting

Retrieved on: 
Tuesday, December 12, 2023
Quality of life, Anemia, Protoporphyrin IX, Bitopertin, Erythropoietic protoporphyria, IRON, Ruxolitinib, Disc, ASH, Photosensitivity, Light, Growth, XLP, Patient, Safety, EPP, Surveying

“This has been a tremendous ASH meeting for Disc, as we presented data across our two most advanced programs.

Key Points: 
  • “This has been a tremendous ASH meeting for Disc, as we presented data across our two most advanced programs.
  • “With these results and the positive initial efficacy data from the DISC-0974 myelofibrosis study that we presented earlier today, Disc is preparing to enter its next stage of growth.
  • Earlier today, Disc also presented initial positive data from the ongoing phase 1b study of DISC-0974 in myelofibrosis (MF) patients with anemia.
  • Bitopertin and DISC-0974 are investigational agents and are not approved for use as a therapy in any jurisdiction worldwide.

Disc Medicine Reports Third Quarter 2023 Financial Results and Provides Business Update

Retrieved on: 
Thursday, November 9, 2023
FDA, Research, IRON, Glycine, Erythropoiesis, Food, EPP, PV, Sodium- and chloride-dependent glycine transporter 1, G&A, AURORA, Iron, Regulation of food and dietary supplements by the U.S. Food and Drug Administration, Ruxolitinib, Light, Porphyria, Inflammation, Poster, Sunlight, Society, ASH, Development, Photosensitivity, Hematology, Quality of life, Phase 10, Anemia, PPIX, Safety, MF, XLP, Pain, Patient, Administration, Polycythemia, Rare-earth element, Pharmaceutical industry, Vaccine, Disc

Third Quarter 2023 Financial Results:

Key Points: 
  • Third Quarter 2023 Financial Results:
    Cash Position: Cash and cash equivalents were $370.5 million as of September 30, 2023, which are expected to fund our operational plans well into 2026.
  • Research and Development Expenses: R&D expenses were $14.4 million for the quarter ended September 30, 2023, as compared to $7.9 million for the quarter ended September 30, 2022.
  • General and Administrative Expenses: G&A expenses were $4.5 million for the quarter ended September 30, 2023, as compared to $2.6 million for the same period in 2022.
  • Net Loss: Net loss was $14.1 million for the quarter ended September 30, 2023, as compared to $16.2 million for the third quarter of 2022.

Avalyn Raises $175 Million in Oversubscribed Series C Financing to Advance Inhaled Pulmonary Fibrosis Programs into Later Stage Clinical Studies

Retrieved on: 
Wednesday, September 27, 2023
Citadel, SR, Pivotal, Norwest Venture Partners, Survival, Weight loss, Rash, Pulmonary fibrosis, Vital capacity, Novo Holdings A/S, Patient, Series, Wellington Management Company, Mortality, Nausea, Photosensitivity, IPF, Idiopathic pulmonary fibrosis, Fatigue, Financial services, Pharmaceutical industry

SEATTLE, Sept. 27, 2023 (GLOBE NEWSWIRE) -- Avalyn Pharma Inc., a clinical-stage biopharmaceutical company focused on development of targeted inhalation therapies for life-threatening pulmonary diseases, announced the closing of an oversubscribed $175 million Series C financing. Avalyn plans to use the funds to continue development of its portfolio of inhalation therapies for interstitial lung disease that improve upon currently approved medications, and advance lead clinical assets, AP01 (inhaled pirfenidone) and AP02 (inhaled nintedanib), into mid-stage clinical trials.

Key Points: 
  • Current investors, including Novo Holdings A/S, Norwest Venture Partners, F-Prime Capital, Pivotal bioVenture Partners, and RiverVest Venture Partners, also participated.
  • In conjunction with the financing, Gianna Hoffman-Luca, Ph.D., of Perceptive Xontogeny Venture Funds, and Jill Carroll of SR One, joined Avalyn’s Board of Directors .
  • In clinical trials to date, inhaled AP01 has been well-tolerated and demonstrated enhanced efficacy , when compared to published results of oral pirfenidone.
  • Avalyn plans to advance AP01 into a Phase 2b trial and AP02 into a Phase 2a trial for patients with pulmonary fibrosis.

Portfolio company Disc Medicine presents positive initial data from Phase 2 BEACON trial at EHA

Retrieved on: 
Saturday, June 10, 2023
PPIX, Sodium- and chloride-dependent glycine transporter 1, LSE, Disc, Biotechnology, Quality of life, Congress, Patient, Erythropoietic protoporphyria, EHA, XLP, Bitopertin, Photosensitivity, Safety, Pharmaceutical industry, EPP

The initial trial data from the BEACON study demonstrated consistent decreases in protoporphyrin IX (the disease-causing metabolite in EPP), significant increases in reported sunlight tolerance and improvements in measures of patient quality of life.

Key Points: 
  • The initial trial data from the BEACON study demonstrated consistent decreases in protoporphyrin IX (the disease-causing metabolite in EPP), significant increases in reported sunlight tolerance and improvements in measures of patient quality of life.
  • The BEACON trial is a randomised, open-label, parallel-arm trial enrolling up to 22 patients with EPP or XLP at trial sites in Australia.
  • Robert Lyne, CEO of Arix Bioscience, said: “We are very encouraged by the positive data from the BEACON trial.
  • We look forward to supporting Disc Medicine as they continue to advance the BEACON study through clinical development.

Disc Presents Positive Initial Data from Phase 2 BEACON Trial of Bitopertin in Patients with Erythropoietic Protoporphyria (EPP) at European Hematology Association (EHA) 2023 Congress

Retrieved on: 
Friday, June 9, 2023
EPIQ, Sodium- and chloride-dependent glycine transporter 1, Protoporphyrin IX, European Hematology Association, Metallicity, Disc, Week, EPP, Bitopertin, Quality of life, First grade, Pain, Congress, Sunlight, IRON, Patient, Erythropoietic protoporphyria, EHA, XLP, Photosensitivity, Poster, Safety, Disease, Pharmaceutical industry, Medical device, Sewage treatment, PPIX

The initial trial data demonstrated consistent decreases in PPIX, significant increases in reported sunlight tolerance and improvements in measures of patient quality of life.

Key Points: 
  • The initial trial data demonstrated consistent decreases in PPIX, significant increases in reported sunlight tolerance and improvements in measures of patient quality of life.
  • “We’re delighted to share these initial, positive data from BEACON, which provide the first clinical evidence supporting our therapeutic hypothesis of bitopertin in EPP.
  • Due to batch processing of samples, the data cutoff for PPIX data was April 7, 2023.
  • Management will host a call to review the presented data on Friday, June 9th at 7:30 am ET.

Disc Medicine Announces Presentation of Initial Data from Phase 2 BEACON Trial in Patients with Erythropoietic Protoporphyria (EPP) at European Hematology Association (EHA) 2023 Congress

Retrieved on: 
Thursday, May 11, 2023
PPIX, Abstract, European Hematology Association, EPP, AURORA, Quality of life, Congress, IRON, Patient, Randomness, EHA, Bitopertin, Photosensitivity, Safety, Pharmaceutical industry, Erythropoietic protoporphyria

The presentation will report initial results from BEACON, the Phase 2, randomized, open‐label, parallel arm trial of bitopertin in Erythropoietic Protoporphyria (EPP) that is ongoing in Australia.

Key Points: 
  • The presentation will report initial results from BEACON, the Phase 2, randomized, open‐label, parallel arm trial of bitopertin in Erythropoietic Protoporphyria (EPP) that is ongoing in Australia.
  • Additionally, an abstract outlining the study design of AURORA, a Phase 2, randomized double-blind, placebo-controlled trial of bitopertin in EPP will be published in the EHA Abstract Book.
  • Management will host a call to review the presented data on Friday, June 9th at 7:30 am ET.
  • Title: Initial Data from the BEACON Trial: A Phase 2, Randomized, Open‐label Trial of Bitopertin in Erythropoietic Protoporphyria
    Title: Study Design of the AURORA Trial: A Phase 2, Randomized, Double-Blind, Placebo-Controlled Trial of Bitopertin in Erythropoietic Protoporphyria

Ventus Therapeutics Provides Updates on cGAS Inhibitor Program at Keystone Symposium on Innate Immunity

Retrieved on: 
Monday, April 17, 2023
Health, Neurology, Other Health, Clinical Trials, Pharmaceutical, Biotechnology, Inflammation, Rheumatology, Lupus, MDT, Therapy, Chronic kidney disease, Drug discovery, NLRP3, SLE, Scleroderma, Organization, Biology, Photosensitivity, Poster, Pain scale, Pharmaceutical industry, Innate Immunotherapeutics

Ventus Therapeutics, Inc. , a biopharmaceutical company utilizing structural biology and a proprietary computational chemistry platform to identify and develop differentiated small molecule therapeutics across a broad range of diseases, announced the details of two presentations to be made at the Keystone Symposium on Innate Immunity: From Innate Sensing to Adaptive Responses, being held April 16-19 in Snowbird, Utah.

Key Points: 
  • Ventus Therapeutics, Inc. , a biopharmaceutical company utilizing structural biology and a proprietary computational chemistry platform to identify and develop differentiated small molecule therapeutics across a broad range of diseases, announced the details of two presentations to be made at the Keystone Symposium on Innate Immunity: From Innate Sensing to Adaptive Responses, being held April 16-19 in Snowbird, Utah.
  • At the 8:00AM MDT Tuesday session, Ventus Chief Scientific Officer Michael Crackower, Ph.D., will present “Structure and Computation-Based Drug Discovery in Innate Immunity.” This presentation will mark the public debut of data showcasing the potency and pharmacokinetic profile of the company’s potential first-in-class cGAS inhibitor, VENT-03.
  • Ventus’ portfolio of cGAS inhibitors have demonstrated modulation of key endpoints in models of lupus, dermal inflammation, and chronic kidney disease.
  • Additionally, Dr. Crackower will present new data on the company’s portfolio of brain-penetrant NLRP3 inhibitors in a seizure model.