We have all been impacted by this unprecedented pandemic in many different ways.  For those of us working tirelessly to push Usher Syndrome research forward, this has significantly set us back. Rapid retinal degeneration in our children doesn’t pause while research does; which is why we can’t afford to wait. We’re asking for your help to reduce the impact of this setback and help us regain the time we’ve lost.

It’s not easy to ask for help at a time like this. However, our research community who receives funding from non-profits are not only struggling to keep the lights on, but are at risk of losing existing work. It takes a dedicated research team to keep cell cultures, zebra fish and mice models alive, as well as observe and document progress with in-flight experiments and tests.

In an effort to promote unity and support struggling non-profits, a global day of giving will take place this Tuesday May 5th. #GivingTuesdayNow is an emergency response to the unprecedented need caused by COVID-19. I know some of you can’t afford to help at this time, but for those who can, we are grateful for any support – $10 - $100 – every dollar helps us get through this.

Thank you for all your support.
Please Take care of each other.

Justin

The rescheduled date is September 24th, 2020

Join Us

We look forward to celebrating Save Sight Now’s first year with you and guests from throughout the Bay Area. We are hosting a food and beverage focused cocktail event with local, quintessential San Francisco restaurants like LihoLiho Yacht Club, Comstock, and Blue Plate providing one unique dish each, and independent beverage companies (AMASS and Fort Point) supplying premium spirits and craft beer. The evening will include, music, specialty cocktail tastings, curated buffet, auctions, a live program and more. This fun evening celebrates the power of community coming together to help save the vision of children and adults impacted by Usher Syndrome, by ensuring their world doesn’t go dark.

VENUE: The Office @ Churchill - 194 Church st. San Francisco, CA 94114
WHEN: Thursday September 24th, 2020
TIME: 6:00 - 9:30pm

CONTACT: For any questions please contact:
Justin Porcano | justin@savesightnow.org

$125 ticket purchase includes food and drink for the evening,
and the opportunity to participate in tastings and auctions. Seating is limited.

For those that cannot attend, but would like to donate, please visit HERE. For individuals and companies interested in sponsorship opportunities please download PDF below or contact Justin Porcano: justin@savesightnow.org

event sponsorship opportunities:

Thank you Body Kinetics for supporting Save Sight Now and our family. When Wayne the manager at Body Kinetics in San Rafael learned we weren’t showing up at the gym because all of our spare time was being put towards running Save Sight Now, he immediately threw his support behind us. Several days later we learned that they planned on organizing several events at all the Marin County Body Kinetics: Yoga, Cardio Kickboxing, Cycle and Zumba. Thank you Wayne and thank you Body Kinetics, we are so grateful for the local community support.

Classes are this Saturday February 29th, starting with 8AM Yoga and 8AM Cardio Kickboxing, then 9:30 Cycle and 10:30 Zumba.

Our First Year

As our first year comes to an end we want to share what we’ve accomplished, because without you and your support, we wouldn’t have gotten here.

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1 Invaluable Partnership

We started by partnering with the Foundation Fighting Blindness - the world’s leading Inherited Retinal Disease foundation. This partnership has allowed us to collect tax exempt donations - specifically for Usher Syndrome 1B research - and has given us access to their robust scientific advisory board, as well as their kind and supportive team.

454 Followers

Thank you for sharing our efforts and following us on Facebook, Instagram and Twitter. Your continued help spreading awareness about Usher Syndrome is incredibly valuable to our success.

1,051 Donors

We are grateful and humbled by this number. 1,051 friends, family, peers, co-workers and complete strangers felt compelled to help us save the vision of our daughter and thousands of other children and adults, and we can’t thank you enough. We hope you’ll continue to support us, because we’re going to need your help fighting childhood blindness.

237,999 Dollars

All funds raised before the end of the year will go directly towards sight saving research. In January 2020 the FFB’s Scientific Advisory Board and oversight committee will evaluate all USH1B and RP research programs to determine where our funding will have the most impact. On average it costs $100,000 a year to support a research track of work and we currently have the ability to support multiple tracks, or one for over 2 years - that’s amazing! We’ll let you know when Save Sight Now funding is awarded and the impact your donations will be having. CLICK HERE to see a list of our potential funding recipients.

Thank you so much for supporting us this year,, we look forward to seeing the impact your donations have in 2020.

Ona gives back to their community through random acts of kindness initiative donating $1 from every sale to Save Sight Now to help fund medical research that could cure childhood blindness related to #ushersyndrome. To all my local Marin and SF friends looking for a socially conscious cannabis dispensary with high quality medical products that delivers and is now supporting Lia and our mission, PLEASE visit www.ona.life for all your cannabis needs. Check out their article in 7X7

Our local brewery the @stateroom has named their seasonal Dubbel🍺after Lia - Sweet Lia Dubbel - and is donating a portion of all sales to savesightnow.org in order to help us fund #Ushersyndrome research. Swing on by The State Room on 4th st in San Rafael, CA to quench your thirst and support a great cause. If you can’t make it there, you can still support Lia and others with Usher Syndrome HERE

We recently met a family battling the same genetic disorder that Lia has (Sisters For Sight). They have two daughters with Usher Syndrome Type 1B. Today (Nov 11th 2019) – Veterans Day – always has special meaning to me because my father is a Vietnam Vet (Sgt. 82nd Airborne) and earned the Purple Heart after being wounded. However, I can’t begin to imagine what this day means for families who have lost loved ones who made the ultimate sacrifice. Ava and Stella, both diagnosed with Usher 1B lost their father – Captain Jeff Haney (USAF F-22 Pilot) – at the ages of 5 and 2 and soon after learned the cause of their deafness was a rare genetic disorder called Usher1B, and it was now also rapidly robbing them of their vision.

Ava and Stella are now 11 and 14. In honor of Jeff and his sacrifice, Anna (Ava and Stella’s mom) is raising money to help fund medical research that can save their vision. To support Anna, Ava and Stella please follow this LINK to donate

Their fight is our fight.

Anna Chambers takes Halloween to the next level to raise awareness around Usher Syndrome and make the most of Halloween(s) with her girls. We are so proud of her efforts and resilience, and her incredible costumes! You can read more about Anna, her girls and their story HERE. We are honored and excited to be working alongside these Sisters For Sight.

We are excited and proud to announce that Sisters for Sight will be joining Save Sight Now in our efforts to raise funding for USH1B research. The coming together of this community to focus our efforts and attention on the same target is what will allow us to arrive at a treatment faster than if we went at it alone - there is undeniable strength in numbers. We look forward to working side by side and fundraising with Sisters for Sight - Ava, Stella and Anna. I want to share their story and why they started Sisters for Sight (years ago) through Anna’s words:

For those of you that don't know, we recently found out why Ava and Stella were born deaf. They both have a very rare genetic syndrome called Usher Syndrome type 1. The girls have already lost so much. Born deaf, severe balance issues, losing their father at the tender age of 5 and 2. I thought we had been thrown enough curveballs, then came Usher Syndrome. Currently there is no cure, without one Usher will rob them of their sight also. I thought it would be easy to put something together to be proactive about raising the much needed funds for research, but it is something, like anything worthwhile, that will take time. I thought documenting our journey here would be good therapy, as well as a good way to spread awareness. Ava wants to see the Eiffel Tower one day. Stella Rose wants to be a veterinarian. I have so many hopes for their future. So many things that I want them to do and see. I will do my best, I will prepare them for a world without sight. Vision will not hinder them from being smart, successful, independent women. It does make my heart sink to think of them not being able to know the feeling of looking into the eyes of their first born, possibly forgetting what I look like. These things are too awful to think about right now and I am certain that by doing my part, spreading awareness, and being as proactive as I possibly can that they will not have to experience life without the gift of sight. This is our journey as a family. We hope that you will join us on it.

Therapy delivery methods aren’t always the focus when we discuss gene therapy strategies. However, they play such a critical role in the holistic success of a gene therapy. A valid gene therapy strategy which stems from years of challenging, good scientific work can sometimes be tainted or unproven because of a poorly designed delivery system or human error at the time of a procedure. Researchers at John Hopkins are working on a delivery concept that could be as affective as sub-retinal injections, but much safer. READ MORE

We are honored and proud to have the support and love from our extended Holland family: Jackson, Carolien de Bie and Willem Verheijen. Our connection with them was immediate from the first time we spoke; we are cut from the same cloth. We knew immediately we had found life long friends and partners who we aligned with us on our mission to save our children's vision. We are excited to be working together with Ushermom and so happy to have them on the Save Sight Now team! Please read this beautifully written story about UsherMom and Save Sight Now

The story of Justin and Rosalyn from San Francisco is our story. Their daughter Lia was diagnosed with Usher 1B when she was 5 months old. The first time we spoke was emotional, it brought back so many memories for us. But as with many other Usher parents, there’s an instant connection. The mutual understanding of fear and grief. The not knowing, the uncertain future, the future that you envisioned so differently for your child. But these parents were also determined. Justin could tell me more about ongoing Usher 1B research than I had ever find myself. (READ MORE)

After months of speaking with our Congressman’s office and with help from our local community Jared Huffman has agreed to co-sponsor the Faster Treatments and Cures for Eye Disease Act HR 2620. This is an incredibly important bill that has the potential to save millions of people from going blind. This accomplishment is an important reminder of the impact we can have when we collectively raise our voices in support of legislation we believe in. To learn more about the bill and how you can ask your congressman or congresswoman to do the same, please visit Save Sight Now HR2620

WOW! Thanks to the help and support of over 700 of you we reached our first fundraising goal of $150K! This is such an important fundraising milestone on our way to $2M in 2 years. Every dollar raised goes towards funding promising medical research that has the potential to save the eyesight of thousands of children and adults who are progressively losing their vision.

The Marin Independent Journal reported on our story and how and why we started Save Sight Now. Please visit the Marin Independent Journal to read the full story

We are kicking off our first fundraising campaign this Monday August 12th to raise money for promising medical research that can save Lia’s vision and others with Usher Syndrome Type 1B. Please help us by donating and sharing Lia’s story. Thank you.

Our Dear friend Ian Lee just completed a double marathon in support of raising awareness and money for Save Sight Now. He flew to San Francisco from London to run in the SF Ultra Marathon. We’re happy to say he completed it in 11hrs! He is alive and well and already on a plane back to London. Ian managed to raise over $1,500. Thanks Ian!

Bipartisan consensus is rare these days. But one thing that Republicans and Democrats have agreed on in recent years is federal support for biomedical research at the National Institutes of Health. Congress has approved significant increases in federal funding for disease research in each of the last four years.

Since Congress funds the research, Congress also has responsibility to get results. Unfortunately, there is a significant gap in funding for translational research. Because of this gap, federally funded research is sitting on the shelf, ignored and unused. READ MORE >>

HR 2620 is bipartisan bill recently reintroduced to Congress aimed at raising $1 Billion through the creation of eye bonds. Eye-bonds would fund translational research and advance treatments and cures for many diseases and conditions that lead to blindness and severe vision impairment for over 4 million Americans and 1/2 million children. This bill is a new model that has been designed to bridge the funding gap between proven research and real treatments, but we need your help convincing our congressional representatives how vital this bill is. HELP HERE

One of the areas that suffer this “valley of death” dearth of funding is retinitis pigmentosa (RP). RP is a rare, truly genetic disorder that results in the loss of vision for about 200,000 patients annually. One RP patient, a Washington lobbyist, involved in financing has provided a ground-up solution, Bio-Bonds. READ MORE >>