Did you know that up to 40% of the homeless youth in this country identify as LGBTQ? Many of these children are homeless because their parents have rejected them merely based on their sexual orientation. Homeless youth are at a greater risk of violence, sexual assault and exploitation. One organization’s mission is to protect these children from harm and help empower them to live independently, and that organization is the Ali Forney Center. Alexander Roque, a SSP dad, is their Director of Development and oversees all of their donor programs. Please read and share this with your friends. We all need to think about how we can help this incredibly important organization and the innocent children they support.
SSP: Can you please tell us about the organization you work for, the Ali Forney Center? What is your mission?
AFC is the nation's largest and most comprehensive provider of services and housing for homeless lesbian, gay, bisexual, and transgender young people. Our mission is to protect homeless LGBTQ youth from the harms of homelessness while providing them with the tools they need to rebuild their lives. LGBTQ youth are eight times more likely to experience homelessness than non LGBT youth. Once homeless, these young people are eight times more likely to experience violence, substance abuse, HIV infection and tragically suicidal ideation. In NYC there are an estimated 4,000 homeless young people on our streets. AFC provides care for nearly half who identify as LGBTQ. Family rejection is the leading cause of LGBTQ youth homelessness.
Please watch this moving video of Alex presenting an award to Lady Gaga and Lady Gaga’s mother, Cynthia, who Alex says “shared kindness and love with our kids in only a way a parent can”.
SSP: Why is this cause so important to you, personally?
As a parent, I struggle with comprehending how families reject their children for any reason but more so I cannot understand how a parent can reject a child because of their LGBTQ identity. Having experienced family rejection because of my identity I am particularly empathetic to the young people we provide care for. Above all, the issue of youth homelessness is one we should all be concerned with. Homeless populations, particularly homeless youth, need our support and care beyond a donation of cash.
SSP: Can you please share a little more about how that very personal experience led you to where you are now?
Generally, my childhood and what I was exposed to led me to a career of caring for others, and more specifically working to improve the lives of young people - prior to joining the Ali Forney Center I worked for a national organization that dealt with a neurodegenerative brain disease - Huntington's Disease. And, before that I worked for a program of the 11th Judicial Circuit Court providing care for children who were abused abandoned or neglected by their parents.
Specifically, I grew up in Miami, Florida as a first generation Cuban-American immigrant. Both my parents were religious and expressed their homophobia and transphobia very openly at home - in fact, family rejection rooted in religious beliefs is the leading cause of LGBTQ youth homelessness - about 90% of the homeless LGBTQ youth population identify religious believes of their parents as the reason for their homelessness. My father in particular threatened me with abandonment (kicking me out of my home) if I were gay. When he suspected that I was gay he sent me to a therapist for psychiatric care - as a result I grew up rejecting my identity and in fear of family rejection.
SSP: Did you always know you wanted to help gay youth?
Having moved out at a very young age and building my own community of support and acceptance, I sought refuge and empowerment in helping others - primarily young people - be it LGBTQ or not. I always knew that my upbringing was not normal nor was it one I deserved, as such my work circles largely around helping youth who are underprivileged, underserved, or otherwise disenfranchised from acceptance, and love.
SSP: What programs do you offer at your center for the LGBTQ youth? I understand you also offer shelter?
In addition to providing shelter and housing services, AFC offers a continuum of services specifically designed to help these young people thrive and overcome the trauma of family rejection and the harms of street homelessness. This includes medical and mental healthcare through our onsite medical clinic, substance abuse treatment, career and educational support in a classroom environment, support group services, leadership development, advocacy training, peer led services, and other vital care. We also do a lot of work around sex trafficking and sex work. In the US more than half of homeless youth are propositioned for sex within 72 hours of being homeless-- typically sex in exchange for food, shelter, or money. Nearly 87% of the young people who come to us indicate they have engaged in commercial sex to survive.
In total, we connect with over 1,700 young people annually who are forced into homelessness. Nearly 50% of our clients come to us from New York, 45% come to us from across the country -- mostly the south, and 5 % come to us from outside of the US.
SSP: Can you tell us a little about Project Birthday?
Project Birthday is a program I launched when I worked with children in the dependency system -- these are young people who were abused, abandoned and/or neglected by their parents. I learned that children in the court system did not celebrate their birthday, and worked with a board member on developing funding that would allow us to celebrate birthdays. When I joined AFC in 2011 I knew I wanted to introduce this program but I wasn't able to amass the funding necessary to make it possible. Earlier this year, I was fortunate to work with a donor and board member on introducing the program. Each month, we host an agency-wide celebration where we celebrate all birthdays that month. Each young person who has a birthday that month receives a birthday card, a gift card to Target, a certificate for a cupcake at Sprinkles, and a birthday celebration with other friends celebrating their birthday. Above and beyond the gift and the time we spend celebrating the birthday, we are able to celebrate this young person's life. We are able to remind them that they are valued, important to us, and loved.
SSP: What has been the most meaningful and impactful experience you’ve had while working the Ali Forney Center?
For me the greatest impact and most meaningful part of my work has been the thousands of people that I have connected to our work over the years. Telling our story, educating others about the realities of our homeless young people, and engaging the community in this work is particularly meaningful because our young people need us - not just for funding - but to remind them that even though their parents/families have rejected them they are valued, and celebrated just as they are. Connecting our community to our work demonstrates for them that they can build new families and new lives, and even though their family rejection may be painful, there is a family waiting for them.
SSP: Funding must be more important now than ever, as I understand certain federal grants are ending this year. How can we get involved, can we volunteer? And how does one donate?
Volunteering, telling our story, liking us on FB and sharing our posts are all ways you can help us. Attached are group volunteer opportunities but there are also individual volunteer opportunities. I personally volunteer once a month in Sunset Park and once a month in Harlem. There are over 18 sites where individuals can volunteer. Donations can be made online on our website at www.aliforneycenter.org or on our Facebook page.
Jill Wood is a very dear friend, patient & Park Slope neighbor. Her story is about her brave and relentless fight to save her son's life. When Jonah was just shy of 2 years old he was diagnosed with a fatal genetic disease that is so ultra-rare that there are only 20 cases known in the US. After the diagnosis, Jill took immediate action and started a foundation in his name, Jonah's Just Begun, to help create awareness and advance the science. Jill needs our help now more than ever as she perseveres to find a cure before it is too late for her son and the other children and families suffering from it. Want to make a difference today? Buy tickets for your family to attend her upcoming Halloween themed fundraiser October 28th, right here in Park Slope!
SSP: Before we learn more about your son’s rare disease and your organization, can you please tell us about your upcoming Halloween fundraiser and why we all need to attend?
The Little Gingerbread House of Horrors is a Halloween themed fundraiser. This year’s theme comes from Hansel and Gretel meets Candyland. The event will take place October 28th from 12-2pm at Shapeshifters Lab in Brooklyn NY. There will be lots of activities for the kids: crafts, face painting, food, music and dancing. Come dressed and hopefully win a prize for best costume. Parents give your kids a fun and wholesome time, while you peruse our awesome raffle baskets. Enjoy a cocktail with friends, you can even dance if you want to. Don’t be scared - there is fun for everyone at the Gingerbread House of Horrors.
A huge thanks to our sponsors: South Slope Pediatrics and The Park Slope Day Camp!
SSP: How did Jonah’s Just Begun come to be?
Jonah was born July 30th, 2008, happy and healthy. Jeremy and I couldn’t take our eyes off of our remarkable son. He was our first child and his birth changed our lives. Jeremy remarked to his father that it felt like his heart had doubled in size, making room to hold all the love he felt for Jonah.
We were living in bliss with our little boy, dreaming of the years to come and all of the wonderful experiences that we would have together as a family.
At Jonah’s ﬁrst-year well visit our astute pediatrician, Dr. Hai Cao, suggested we get Jonah an MRI. Dr. Cao noted that the size of Jonah’s head was “off the charts.” Nine months later, Our geneticist gave Jeremy and I the news that changed our lives a second time: Jonah had Sanfilippo Syndrome Type C, a rare genetic disease that is both fatal and untreatable.
When I asked our geneticist if this meant a death sentence for Jonah. She paused for a very long time, my heart sank. She came back and said: “Today there are treatments thought impossible just five years ago.”
That is exactly what we needed to hear to give us the strength to fight Jonah’s fate.
Do to the rarity of Jonah’s syndrome there was not a single research program happening at the time of Jonah’s diagnosis. My husband and I found this unacceptable. Jeremy and I reached out to every resource that we had, forming Jonah’s Just Begun-Foundation to Cure Sanfilippo Inc. We started fundraising and searching for scientists that would help us.
SSP: What exactly is Sanfilippo and how are children affected?
Sanfilippo Syndrome is a genetic disorder. My husband and I are both carriers of the defective gene that causes Sanfilippo Syndrome. We both passed our defected gene to Jonah. There isn’t newborn screening for Sanfilippo Syndrome and there was no way of knowing that we were carriers. Because of this defective gene, Jonah’s body is unable to produce an enzyme, this enzyme’s job is to breakdown and recycle a molecule called Hepran Sulfate (HS). Because of this defect, HS is left to clog every single cell in the body.
SSP: What happens to a child with Sanfilippo Syndrome?
Sanfilippo is an insidious disease that often goes undetected for years. Most children are born with no visible signs that anything is wrong. It’s not until the preschool years that children start to show cognitive delays; even then, the disease is often misdiagnosed. It is most commonly misdiagnosed as Autism.
Sanfilippo is progressive and can be broken down into stages. Some describe Sanfilippo as a childhood Alzheimer’s.
First stage: The affected child presents with: delayed speech, hyperactivity, impulsivity and behavioral issues. Sanfilippo children have distinctive facial features, you must be trained to notice them: prominent forehead, bushy eyebrows, coarse hair, thick skin, short neck, full lips, low thick ears, a wide flat nose. Their facial features are described as “coarse.” Affected children are prone to sinus and ear infections, diarrhea, and minor muscular skeletal issues. The problems associated with Sanfilippo are vast and varied.
Second stage: The affected child will become extremely active, restless, suffer sleeplessness and exhibit difficult behavior. Many children are compelled to chew on things, grab at people or items. Some children have seizures others have visual and hearing problems. Over time, speech and communication skills decline along with other cognitive and motor skills.
Third stage: The disease will take its ultimate toll. The child will lose the ability to walk, talk and eat on his own while his body shuts down. Death may occur as early as the age of five. More common, however, are children that live into their early teens, with some surviving into their twenties.
SSP: How rare (or ultra-rare) is this disease and is there a treatment?
A rare disease is defined as having a patient population of 200,000 or less. Jonah’s version of Sanfilippo only has 20 known patients in the United States, the current known incident rate is 1 in 1.5 million. Sanfilippo Syndrome is considered ultra-rare.
SSP: What is the current research?
JJB along with our consortium: H.A.N.D.S. made up of international medical research foundations like JJB have funded over a million dollars towards a treatment. Our gene therapy program is ready to go to trial. The only thing stopping us is funding for the vector production for a human clinical trial.
A handful of Mom and Pop foundations have funded a treatment that once had no hope all the way to the point of clinical trial. We could have never gotten this far without the generosity of others. Now we need a financial partner to help with manufacturing of the drug and the finances of a clinical trial.
SSP: What is next/what can you share with us?
There is still a lot of work to be done. We need to complete our Natural History Study (NHS) a NHS follows the progression of a disease by collecting medical data from the patients that suffer from the disease. Our Natural History for Sanfilippo type C and D is being conducted at the Montefiore Children’s Hospital under the direction of Dr. Paul Levy. 20 patients will come to NY for two days of testing, one day will be spent at Montefiore where the children will undergo a battery of tests, involving bloodwork, MRI, E-Xrays, Ultrasound etc.
The second day the children will participate in cognitive testing at the Albert Einstein Medical Center under the direction of Dr. Sophie Molhom. Dr. Molhom’s testing is not covered by insurance, each day of testing for each child is $1,000. That’s $20,000 a year, this study will happen for five years. This study is vitally important as the data will provide proof to the FDA that our gene therapy is working.
SSP: What is needed NOW and how can we help support you?
We need to raise funding to cover the cognitive portion of the NHS that is not covered by insurance. $1,000 per child per year.
One way you can help support is to come to our upcoming fundraiser: “The Little Gingerbread House of Horrors” You can purchase tickets http://bit.ly/GingerbreadHouseofHorror
If you can’t make it to the event you can help by supporting our raffle and auction tables.
Purchase an item from our amazon gift list and it will be re-gifted into themed baskets for raffle prizes. https://smile.amazon.com/hz/wishlist/dl/invite/46wCYyd
Lastly, we can always use volunteers to help set up and take-down the day of the event. The set design for our life-sized gingerbread house event will take a lot of manpower to construct.
Dr. Sanjay Gupta on CNN interviewing Johnny Lee Miller: