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Patient Perspectives in Vestibular Schwannoma Surveillance
You are being invited to participate in a research study titled Patient Perspectives in Vestibular Schwannoma Surveillance. This study is being conducted by Jay Piccirillo, MD, Principal Investigator.
Study Information:
The researchers want to interview patients who are either actively undergoing observation or underwent observation before ultimately receiving treatment for their vestibular schwannoma. They hope that in conducting these interviews they can not only gain insight into the important factors in this decision making process but also help guide future research for patients considering to undergo observation for their vestibular schwannoma.
Am I Eligible to Participate?
Participants are eligible for this study if they are 18 years or older, live in the United States, speak English, have access to a phone for a 30 minute conversation, have chosen to observe their vestibular schwannoma, and have not been diagnosed with NF2.
What Does Participating in This Study Involve?
- Completion of one screening survey (5 minutes)
- Completion of one follow up survey (10 minutes)
- Completion of one phone interview (30 minutes)
Participants who are interested will be asked to fill out an initial screening survey via REDCap, those who are eligible will be instructed to fill out one additional survey as well as be contacted to coordinate an interview time.
As a thank you for helping advance the collective knowledge of this condition, the research team is offering a $20 reimbursement for anyone who completes the interview.
In order to determine if you meet the eligibility criteria for the study please complete the Screening Survey.
If you are eligible, we will contact you with additional questions and coordinate the interview for the study.
If you have questions please email otooutcomes@wustl.edu or call Jay Piccirillo, MD, Principal Investigator, at (314) 362-4356.
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Research Grant Program
The Mission
The ANA is dedicated to furthering all aspects of scientific knowledge related to acoustic neuromas, including its cause(s), development, and treatment, thus improving the lives of individuals living with AN, and finding its ultimate cure.
Our Interest Areas of Funding
We encourage investigators to submit grant proposals across the broad spectrum of acoustic neuroma. These areas may be original research drawn from disciplines such as audiology, biology, psychology, sociology, or pharmacology.
For 2023, our Research Committee has additionally identified three broad areas of interest:
Causes and Cures: This includes such areas as chromosomal, cellular, genetic studies, etc.
Technological, Cultural, and Social Interventions: The use of technology in post-treatment, including health apps in monitoring health conditions, and the effectiveness of online self-directed therapies for depression, fatigue, cognitive skills, physical strength/stability, biofeedback, cochlear implant, etc.
Quality of Life: Consideration given to Pain Management – including headaches – and issues related to facial paralysis, social, emotional, cognitive, etc.
Eligibility
The ANA will consider funding researchers and/or centers who have a formal affiliation with nonprofit, academic, medical, or research institutions. The principal investigator must have an appropriate level of background, training, and institutional engagement to support the proposed research.
Amounts Available for Funding
Individual awards are typically up to $25,000 in a given year. Multi-year projects may be considered if they are consistent with our research initiative. Funding beyond the first year will be on a year-to-year basis, and multi-year projects are subject to annual review for ongoing funding.
Our Annual Grant Cycle
The grant cycle is straightforward: a Request for Proposals (RFP), our review of submissions, and our announcement of grants awarded.
The RFP will typically be announced at least once annually, during the second quarter of the year. Typically, multiple RFPs will have a different mission and may not be made on a predetermined basis. The time from our announcement to our proposal deadline will be of a reasonable length to allow for the preparation of a thorough RFP.
In addition, there may be an opportunity for an ‘out of cycle’ request for research funding that will be considered independently and at the discretion of the ANA leadership. Information on the timelines of the grant cycle will be made available through select ANA publication, digital, and communications platforms.
For further information, please contact Jim Shea, CEO, at jimshea@anausa.org.
Proposal Guidelines
Our Research Task Force has established strong guidelines for those applying for a grant. Included within these guidelines (five-page limit for proposal) are requests for:
- Summary of most recent/relevant research and a statement of primary purpose
- A concise Statement of Goals
- An Impact Statement
- Research Strategy including Participants, Study Design, Analysis Method, and Potential Outcomes
- Budget, including a statement that the ANA does not provide funding for indirect costs
- Project Timeframe
- List of Personnel Support
Proposal detail requirements can be found here, and helpful applicant guidelines can be found here. Please submit all proposals to researchgrantprogram@anausa.org.
Award Review Process
All grant submissions are reviewed by our Research Committee and reviewing parties include ANA Board members and third-party scientists with specialization in the area of acoustic neuroma. All grant submissions are considered using a blind review process and a funding recommendation will be confirmed by a decision of the ANA Board of Directors.
Schedule for 2023:
- Request for Proposals - Sept 15 - Oct 16
- Full Proposal deadline - Oct 16
- Review of Proposals - Oct 16 - Nov 30
- Announcement of Grant Funding - December 1
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Giving Tuesday is the global movement that encourages millions of people all over the world to give back, inspire others,
and take action to generate change. This year, there are three ways to participate that we think will make a difference in the AN community.
Explore our page to see how you can join us!
GIVE BACK
Giving Tuesday Presentation
We're giving back to the AN community with a presentation from Dr. Marc Bennett and Dr. Kareem Tawfik of Vanderbilt University on Hearing Preservation Options.
Please join us at 1:30 pm ET on Giving Tuesday - everyone is welcome!
INSPIRE OTHERS
#MyANStory
More than 3,500 patients will be diagnosed with an acoustic neuroma this year. These diagnoses can be frightening, overwhelming, and life-altering.
Where will these patients find the information, support, and community they’ll need?
Help us raise awareness and help others find the support they need by sharing your AN story.
Submit your story and share on social media using #MyANStory.
TAKE ACTION
25K in 25 Days Challenge
Join our Giving Community! Help us continue our mission,
offering information and support to those who need us most.
There are two easy ways to give:
1. Contribute to our 25K in 25 Days fundraiser using our donor form.
2. Create a Giving Tuesday Facebook fundraiser.
Your donation WILL make a difference!
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ANA Peer Mentor Program
One-on-One Support
First Name | Last Name | Phone | State | Size at Treatment | Treatment Type | Age at Treatment | Treatment Year | Additional Languages | Hearing Device | Issues | |
Robin | Batra | rbatra854@gmail.com | 949 878-8801 | AZ | 1.2 cm | Radiation - Gamma Knife | 58 | 2013 | tinnitus; facial spasms | ||
* Margaret | Briggs | glmrchk@gmail.com | 619 500-6141 | AZ | 1.6 cm | Surgery - Translab | 60 | 2015 | Siemens hearing aid; Bose Hearphones | facial rehab, fatigue, headaches, vestibular therapy, eye issues; eye drops | |
* Carol | Franklin | lefsequeen53@gmail.com | 520 722-8340 | AZ | 2.5 cm | Surgery - Retrosig | 47 | 2001 | Phonak BTE | ||
* Tricia | Jennings | azchipster@gmail.com | 520 825-9845 | AZ | 5 cm | Surgery - Retrosig | 48 | 2001 | Phonak CROS BTE bluetooth | CSF leak; eye closure issues; tear duct plugs; tinnitus; vestibular therapy; facial synkinesis | |
* Tracy | Schwimmer | marcschwim@aol.com | 602 561-1855 | AZ | 2.5 cm | Surgery - Retrosig | 2012 | tumor debulking; headaches; regrowth; facial weakness; facial numbness; facial rehab; CSF leak; CSF leak repair; VP shunt; dry eye | |||
* Tracy | Schwimmer | marcschwim@aol.com | 602 561-1855 | AZ | 2.5 cm | Surgery - Translab | 2015 | tumor debulking; headaches; regrowth; facial weakness; facial numbness; facial rehab; CSF leak; CSF leak repair; VP shunt; dry eye | |||
Bob | Sterrett | rsterrett1@aol.com | 480 444-8409 | AZ | 1 cm | Observation | Cochlear Implant | tinnitus | |||
* Kimberly | Ary | kimberly.ary3@gmail.com | 208-390-6361 | CA | 3.4 cm | Surgery - Translab | 22 | 2016 | CSF leak; shunt; headaches; fatigue; balance issues; blurry vision; double vision; titanium plate; regrowth | ||
* Kimberly | Ary | kimberly.ary3@gmail.com | 208-390-6361 | CA | 3.4 cm | Radiation - LINAC | 29 | 2023 | CSF leak; shunt; headaches; fatigue; balance issues; blurry vision; double vision; titanium plate; regrowth | ||
* Hazel | Berman | hazelannb@sbcglobal.net | 916 983-9313 | CA | 2.5 cm | Surgery - Translab | 36 | 1996 | Baha | 7/12 facial nerve graft; gold eye weight | |
* Melissa | Diaz | missdiaz@me.com | 408 416 1145 | CA | 3 cm | Surgery - Translab | 33 | 2011 | Spanish | balance issues; vestibular therapy; synkinesis; facial neuromuscular rehab; Botox; facial paralysis; dry eye; fatigue post-surgery; depression; mental health therapy; taste issues | |
* Christina | Esfehani | esfehani@yahoo.com | 650 575-6990 | CA | 2.3 cm | Radiation - CyberKnife | 27 | 2004 | |||
* Leah | Keith | leahkeith@me.com | CA | 2.5 cm | Surgery - Translab | 42 | 2011 | Oticon Ponto Pro | acupuncture for tinnitus | ||
* Helen | McHargue | foodsmarts@gmail.com | 760 728-0309 | CA | .5 cm | Radiation - CyberKnife | 66 | 2009 | Phonak CROS; PocketTalker amplification device | vestibular therapy | |
* Helen | McHargue | foodsmarts@gmail.com | 760 728-0309 | CA | .5 cm | Observation | 64 | 2007 | Phonak CROS; PocketTalker amplification device | vestibular therapy | |
* Mark | McLaren | greatscot@earthlink.net | 925 838-8175 | CA | 2 cm | Radiation - CyberKnife | 44 | 2001 | |||
* Carol | Most Walker | crmost@icloud.com | 415 889-3547 | CA | .9 cm | Radiation - CyberKnife | 68 | 2021 | SSD; tinnitus | ||
* Carol | Most Walker | crmost@icloud.com | 415 889-3547 | CA | .9 cm | Observation | 56 | SSD; tinnitus | |||
Maggie | Shepard | mizmudpie@gmail.com | 530 859-1149 | CA | 11 mm | Surgery - Retrosig | 66 | 2022 | French | Phonak OTE | balance issues; vestibular therapy; oscillopsia; fatigue; tinnitus |
Cody | Cooper | codyc.co@gmail.com | 720 403-1091 | CO | 3.4 cm | Surgery - Retrosig | 37 | 2016 | Baha | vestibular therapy; neuromuscular facial rehab; eye weight; eye weight removal; scleral lens; headaches | |
Cody | Cooper | codyc.co@gmail.com | 720 403-1091 | CO | 3.4 cm | Surgery - Retrosig | 38 | 2016 | Baha | vestibular therapy; neuromuscular facial rehab; eye weight; eye weight removal; scleral lens; headaches | |
* Virginia | Ferraro | ginnietennis@hotmail.com | 303 469-6391 | CO | .6 cm | Observation | 75 | Starkey Genesis Ai 24 RIC-R | tinnitus; balance issues | ||
* Tara | Paul | tnpaul@comcast.net | 303-868-7181 | CO | 3 cm | Surgery - Translab | 42 | 2020 | BiCROS | regrowth; facial paralysis; facial rehab; gold weight; scleral lens; tarsorrhaphy; vestibular therapy; fatigue; swallowing issues; taste issues; tinnitus | |
* Tara | Paul | tnpaul@comcast.net | 303-868-7181 | CO | 3 cm | Radiation - Gamma Knife | 42 | 2020 | BiCROS | regrowth; facial paralysis; facial rehab; gold weight; scleral lens; tarsorrhaphy; vestibular therapy; fatigue; swallowing issues; taste issues; tinnitus | |
Samira | Rajabi | samirajabi@gmail.com | 303 547-0043 | CO | 3.5 cm | Surgery - Translab | 25 | 2012 | Farsi; French | regrowth; CSF leak; temporary shunts; eye issues; fatigue, headaches; tinnitus; taste issues; dental issues; chronic pain, SSD | |
Samira | Rajabi | samirajabi@gmail.com | 303 547-0043 | CO | 3.5 cm | Surgery - Retrosig | 25 | 2012 | Farsi; French | regrowth; CSF leak; temporary shunts; eye issues; fatigue, headaches; tinnitus; taste issues; dental issues; chronic pain, SSD | |
Bonnie | Bostrom | bobon611@aol.com | 860 214-3514 | CT | 1.7 cm | Radiation - Gamma Knife | 65 | 2012 | short-term headaches | ||
Stefanie | Batson-Martin | floridaswimmer14@aol.com | 407 493-7095 | FL | 4 cm | Surgery - Translab | 30 | 2019 | Oticon Ponto | tinnitus; headaches; facial twitching; fatigue; eye issues; balance issues | |
Stefanie | Batson-Martin | floridaswimmer14@aol.com | 407 493-7095 | FL | 4 cm | Radiation - Proton Beam | 31 | 2020 | Oticon Ponto | tinnitus; headaches; facial twitching; fatigue; eye issues; balance issues | |
Stefanie | Batson-Martin | floridaswimmer14@aol.com | 407 493-7095 | FL | 4 cm | Observation | 25 | 2014 | Oticon Ponto | tinnitus; headaches; facial twitching; fatigue; eye issues; balance issues | |
Sherry | Cottrell | sjrmcottrell@gmail.com | 561 704-6733 | FL | 7 mm | Surgery - Translab | 51 | 2021 | Kanso 2 Cochlear Implant | balance issues; fatigue; headaches; taste/dental; tinnitus | |
* Dyanne | Hughes | dyhughes55@comcast.net | 904 624-0940 | FL | 1.9 cm | Surgery - Translab | 53 | 2009 | BiCROS; Bose noise reducer headphones | facial neuromuscular rehab; synkinesis; Botox; eyelid surgery | |
* Chad | Nye | chadnye@gmail.com | 407 496-8357 | FL | 1.5 cm | Surgery - Translab | 2011 | BiCROS; Bose noise reducer headphones | |||
* Chad | Nye | chadnye@gmail.com | 407 496-8357 | FL | 1.5 cm | Radiation - CyberKnife | BiCROS; Bose noise reducer headphones | ||||
Robert | Olivo | oedsall4@aol.com | 352 775-6858 | FL | 1.7 cm | Radiation - Gamma Knife | 70 | 2015 | Phonak Paradise 90 Hearing Aids bilateral | ||
David | Puzzo | secgen11@gmail.com | 813 480-5679 | FL | 1.4 cm | Observation | Widex BiCROS | ||||
* Agnes | Garino | algarino@sbcglobal.net | 314 610-9259 | GA | 1.5 cm | Surgery - Retrosig | 51 | 1996 | Phonak BiCROS | headaches; headache therapies | |
Jim | Henschel | jim.henschel@gmail.com | 770.840.5470 | GA | 2.5 cm | Surgery - Translab | 60 | 2021 | Phonak CROS | eye issues; eye weight; facial paralysis; facial nerve reanimation surgery | |
* Meredith | Daly | meredith@meredithdaly.com | 678.525.1941 | GA | 3.6 cm | Surgery - Translab | 52 | 2012 | Phonak CROS | dry eye; balance issues; dizziness issues | |
Lisa | Trumbull | lisaannetrumbull@gmail.com | 808 253-9522 | HI | .13 cm | Surgery - Translab | 37 | 2017 | balance issues; double vision; taste changes | ||
* Leah | Jenks | leahgjenks@gmail.com | 708 954-7774 | IL | 2 cm | Surgery - Retrosig | 27 | 2022 | balance issues; vestibular therapy; tinnitus; SSD; dizziness | ||
Sheri | Settipani | sbwerner@comcast.net | 847 924-5929 | IL | 2 cm | Surgery - Retrosig | 48 | 2016 | facial issues; eye issues; maintained hearing | ||
* Kathy | Gardner | kathyc0407@aol.com | 502 593-9224 | KY | 3.4 cm | Surgery - Translab | 55 | 2013 | BiCROS | 12/7 facial transfer; facelifts; browlift; gold weight; gold weight removal; punctal occlusion; vestibular rehab | |
* Kathy | Gardner | kathyc0407@aol.com | 502 593-9224 | KY | 3.4 cm | Radiation - Gamma Knife | 57 | 2015 | BiCROS | 12/7 facial transfer; facelifts; browlift; gold weight; gold weight removal; punctal occlusion; vestibular therapy | |
Deborah | Polson | decyrs@aol.com | 502 930-3106 | KY | 1.3 cm | Surgery - Retrosig | 59 | 2014 | headaches; head pain; neck pain; balance issues; vestibular therapy; tinnitus; titanium mesh; Botox for headaches | ||
Cathy | Beardslee | cbeardslee2@gmail.com | 305 439-2691 | MA | 3.4 cm | Family Member - Caregiver | 25 | 2023 | CROS | CSF leak; headaches; SSD; balance issues | |
Phyllis | Pearl-Baxter | pbp214@yahoo.com | 781 213-9914 | MA | 1 cm | Radiation - CyberKnife | 44 | 2006 | Phonak | SSD; migraines; balance issues; tinnitus | |
* Miranda | Sacharin | m.sacharin@gmail.com | 925 297-9435 | MA | 3.1 cm | Family Member - Caregiver | 52 | 2009 | facial retraining; eye weight; eye ptosis surgery; SSD; balance issues; cognitive issues | ||
Heather | Homick | hhomick93@gmail.com | 240 508-4282 | MD | 3.7 cm | Surgery - Retrosig | 25 | 2018 | SSD; facial reanimation; free muscle transfer; Botox; facial retraining; dry eye; eyelid weight removed; balance issues; vestibular therapy | ||
* Bonny | Lally | bdaymusic@gmail.com | 410 660-1259 | MD | 2.9 cn | Surgery - Retrosig | 60 | 2017 | CROS | scleral lens; eyelid weight (removed); migraines; vestibular therapy; tinnitus; fatigue; headaches | |
* Allison | Shaffer | akgshaffer@gmail.com | 301 706-7900 | MD | .9 cm | Surgery - Middle Fossa | 40 | 2010 | |||
* Rick | May | rmay726@gmail.com | 734-812-8054 | MI | 2.5 cm | Surgery - Middle Fossa | 52 | 2011 | Phonak hearing aid | tinnitus; vestibular therapy | |
Kenneth | Posner | kennyposner@gmail.com | 248 464-0808 | MI | 1.5 cm | Surgery - Middle Fossa | 51 | 2009 | vestibular therapy; migraines; headache therapy, maintained hearing | ||
Jill | Tolle | jilltolle@yahoo.com | 818 219-5857 | MI | 2.5 cm | Surgery - Translab | 41 | 2013 | vestibular therapy; tinnitus | ||
* Laura | Ferenci | lkferenci@gmail.com | 612 501-2248 | MN | 3 cm | Surgery - Translab | 57 | 2016 | balance issues; vestibular therapy; blurry vision; eye surgery; fatigue; tinnitus; taste issues | ||
Jay | Magrisso | jay.magrisso@gmail.com | 717 586-3275 | MN | 3 cm | Surgery - Retrosig | 39 | 2019 | Italian | SSD; brain fog; fatigue; balance/dizziness issues; headaches; eye issues | |
Nancy | Rhein | nancyrhein@gmail.com | 612-240-0415 | MN | 2 cm | Surgery - Retrosig | 62 | 2016 | Phonak hearing aid | balance issues; dizziness; vestibular therapy; fatigue; headaches; taste issues | |
* Carol | Gardner | carolhgardner@gmail.com | 573 690-3296 | MO | 3.1 cm | Surgery - Translab | 2020 | BiCROS | blephoplasty; titanium eyelid weight; facial therapy; Botox; TMJ | ||
* Stewart | Binder | marylandterp.888@gmail.com | 919 624-3256 | NC | 2.3 cm | Surgery - Translab | 59 | 2011 | Med-El Bonebridge | facial neuromuscular rehab; Botox; synkinesis; dry eye; platinum eye weight | |
* Lisa | Fisher | lfisher@rubollc.com | 412 996-2386 | NC | 2.5 cm | Surgery - Translab | 33 | 2017 | Balance issues; CSF leak; fatigue; dry eye; eye closure issues; eye drops; eye patch; eye tape; facial rehab for synkinesis; Botox; regrowth; dry mouth; dental issues; prescription toothpaste | ||
* Lisa | Fisher | lfisher@rubollc.com | 412 996-2386 | NC | 1.3 cm | Surgery - Translab | 39 | 2023 | Balance issues; CSF leak; fatigue; dry eye; eye closure issues; eye drops; eye patch; eye tape; facial rehab for synkinesis; Botox; regrowth; dry mouth; dental issues; prescription toothpaste | ||
Kathy | Hill | kjayhill@gmail.com | 336 707-7013 | NC | .8 cm | Surgery - Middle Fossa | 52 | 2017 | Oticon Baha; Oticon More hearing aid | vestibular therapy; tinnitus; dry eye; facial paralysis | |
Neil | Donnenfeld | ndonnenfeld@gmail.com | 617 285-0579 | NH | 1.4 cm | Radiation - Proton Beam | 50 | 2013 | tinnitus; hyperacusis; synkinesis | ||
* Iryna | Mosendz | lutirinas@gmail.com | 609 705-6623 | NJ | 2.3 cm | Surgery - Middle Fossa | 28 | 2017 | Russian;Ukranian | dry eye; regrowth | |
* Iryna | Mosendz | lutirinas@gmail.com | 609 705-6623 | NJ | 2.3 cm | Radiation - Proton Beam | 30 | 2019 | Russian;Ukranian | dry eye; regrowth | |
Mary | Steed | maryellen.steed@gmail.com | 347 551-3486 | NJ | 5 cm | Family Member - Caregiver | 11 | 2021 | SSD; dry eye; headaches; facial weakness; speech therapy; occupational therapy; balance issues | ||
Howard | Waldrop | howardrop@rocketmail.com | 201 818-8977 | NJ | 1 cm | Radiation - Gamma Knife | 50 | 2015 | Starkey XINO | ||
* Tracey | Collins | tracey.collins6273@gmail.com | 581 382-3283 | NY | 2.5 cm | Surgery - Retrosig | 35 | 2009 | |||
Scott | Bornholdt | sbornholdt@zoomtown.com | 513 884-7442 | OH | 2.7 cm | Surgery - Retrosig | 52 | 2022 | Oticon | Fatigue; balance issues; vesibular therapy; tinnitus | |
Erin | Heidrich | erinheidrich@gmail.com | 859 640-1083 | OH | 1.3 mm | Surgery - Middle Fossa | 39 | 2021 | Osia 2 | Balance issues; dizziness; vestibular therapy; cognitive behavioral therapy for tinnitus | |
* Emily | Praeter | elpraeter@gmail.com | 513 265-1350 | OH | 2 cm | Surgery - Middle Fossa | 40 | 2018 | Phonak CROS | balance issues; dizziness; vestibular therapy; cognitive/neurological issues; fatigue; headaches | |
Kate | Roelker | kroelker@hotmail.com | 513 939-5920 | OH | 1.8 cm | Surgery - Middle Fossa | 65 | 2017 | Hearing aid | eye issues; tinnitus; facial therapy; vertigo; vestibular therapy; maintained hearing; tinnitus | |
* Sara | Wasserman | artspeaks10@hotmail.com | 928 301-8781 | OH | 2.5 cm | Family Member - Caregiver | 64 | 2015 | SSD; balance issues; dizziness, fatigue | ||
* Alice | Wedding | aj2mydad@yahoo.com | 513 315-2341 | OH | large | Surgery - Translab | 64 | 2012 | Baha | tinnitus; vestibular therapy | |
* David | Noyes | dcnoyes@comcast.net | 503 419-7418 | OR | 3.5cm | Surgery - Retrosig | 35 | 1999 | Spanish | Baha | facial rehab; facial surgery; vestibular therapy; eye weight |
Robert | Bolen | rjbolen@verizon.net | 215 679-5945 | PA | 1.1 cm | Radiation - Gamma Knife | 76 | 2018 | SSD; tinnitus | ||
* Marya | Camilleri | mc.ana.philly@gmail.com | 215 313-0727 | PA | 2.3 cm | Surgery - Retrosig | 42 | 2019 | balance issues; dizziness; vestibular therapy; headaches; facial weakness; dry eye; vision therapy; SSD | ||
Patrick | Fink | pmfink@gmail.com | 412 480-2765 | PA | 2.1 cm | Radiation - Gamma Knife | 28 | 2017 | fatigue; tinnitus; headaches | ||
* Nancy | Graffius | ngraffius@comcast.net | 610 939-9114 | PA | 4 cm | Surgery | 51 | 1994 | |||
Robert | Vance | bob@vancerenz.com | 814 880-6084 | PA | 1 cm | Radiation - Varian Trilogy | 60 | 2013 | Signia BiCROS | vestibular therapy; tinnitus | |
* Anthony | DiBella | ajd@orgtransitions.com | 401 523-9467 | RI | 1.7 cm; 3.1 cm | Avastin | 71 | 2019 | French; Italian; Spanish | Oticon OPN1 | NF2; tinnitus |
* Anthony | DiBella | ajd@orgtransitions.com | 401 523-9467 | RI | 1.7 cm; 3.1 cm | Observation | 44 | 1992 | French; Italian; Spanish | Oticon OPN1 | NF2; tinnitus |
* Ricky | Roberson | rroberson@millsautogroup.com | 803 729-4040 | SC | 3.5 cm | Surgery - Translab | 47 | 2017 | Phonak BiCROS | dizziness | |
Lisa | Porisch | lisaporisch@gmail.com | 605 431-5827 | SD | 3 mm | Surgery - Middle Fossa | 46 | 2022 | Pre-treatment headaches; balance issues; vestibular therapy; tinnitus; maintained hearing; emotional cognitive issues | ||
* Lauren | Vaden | tarheelbluesy@gmail.com | 615 232-4929 | TN | 1 cm | Surgery - Translab | 35 | 2019 | fatigue; SSD; hemi-facial spasms; facial sensitivity; tinnitus; balance issues | ||
* Linda | Dorasami | anausa.dfw@gmail.com | 817 244-0615 | TX | 1.6 cm | Surgery - Retrosig | 47 | 1995 | Spanish | vestibular rehab; headaches; pain management | |
* Linda | Dorasami | anausa.dfw@gmail.com | 817 244-0615 | TX | 3 cm | Observation | 66 | 2014 | Spanish | NF2 | |
Katy | Fredericksen | katylf@yahoo.com | 832 585 6346 | TX | 4 cm | Surgery - Retrosig | 19 | 2019 | balance issues; vestibular therapy; pre-treatment headaches; facial issues (short-term); dry eye; watch and wait for regrowth | ||
* Mariana | Irato | mariana_irato@yahoo.com | 832 474-4090 | TX | 2 cm | Surgery - Retrosig | 45 | 2021 | Spanish | tinnitus; fatigue; headaches | |
Laurie | Reid | lauriegailreid@outlook.com | 713 503-2788 | TX | 10 mm | Surgery - Middle Fossa | 53 | 2020 | hearing preserved; balance issues; vestibular prehab; hearing sensitivity; custom ear plugs; fatigue; tinnitus; dry eye | ||
* Laura | Spence | lauraspencetx@gmail.com | 972 974-1516 | TX | 1.2 cm | Surgery - Middle Fossa | 41 | 2019 | Oticon Baha | facial Botox for synkinesis; DAO resection; vestibular therapy, severe dry eye; RX eye drops; Scleral lens; balance issues; headaches; fatigue | |
* Johnny | Diaz | johnny.diaz@yahoo.com | 904 738-5063 | VA | 2.5 cm | Surgery - Middle Fossa | 39 | 2008 | Spanish | ||
Mary Ann | Mugel | mamugel@gmail.com | 804 353 0563 | VA | 2.1 cm | Radiation - Gamma Knife | 65 | 2019 | hydrocephalus; permanent VP shunt; fatigue; tinnitus; diminished hearing; balance issues; dizziness; vestibular therapy | ||
* Michelle | Nemeth | michelle.f.nemeth@gmail.com | 703 772-7114 | VA | 1.4 cm | Surgery - Middle Fossa | 27 | 2013 | maintained hearing | ||
Mary | Green | marygreen4810@gmail.com | 262 470-4810 | WI | 3.1 cm | Surgery - Retrosig | 50 | 2017 | CROS | vestibular therapy; speech therapy; synkinesis; facial rehab; Botox; eye issues; dry eye; headaches pre-treatment; hydrocephalus pre-treatment | |
* Judy | Jones | jjonescurran539@gmail.com | 414 491-6249 | WI | 2.2 cm | Radiation - CyberKnife | 60 | 2013 | trigeminal neuralgia; balance issues; headaches; tinnitus | ||
* Emily | Truell | anayoungadults@gmail.com | 920 229-5201 | WI | 3 cm | Surgery - Translab | 27 | 2015 | Oticon Ponto Plus | CSF leak; headaches; tinnitus; balance therapy | |
Brian | Vincent | vinbri3@gmail.com | 414 758-0807 | WI | 1.8 cm | Radiation - CyberKnife | 53 | 2016 | fatigue; tinnitus; headaches |
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Resources for Young Adults
The ANA provides the following resources to help bring young adults with ANs together and find information and support.
Young Adult Facebook Group
This is a closed group Moderated by ANA Staff and Volunteers.
Young Adult Online Support Group
The group meets several times a year via Zoom and is moderated by ANA Peer mentors.
For more information, contact:
Emily Truell, Peer Mentor/Support Group Leader, anayoungadults@gmail.com
Michelle Nemeth, Peer Mentor/Support Group Leader, michelle.f.nemeth@gmail.com
Melanie Hutchins, Manager, Volunteer Programs, volunteers@anausa.org.
Peer Mentor Program
Peer Mentors are volunteers who are acoustic neuroma patients and caregivers that are willing to talk about their acoustic neuroma experience. They provide information, encouragement, and support to other acoustic neuroma patients via telephone, email and video chat. A list of peer mentors is provided in our free patient kit and is available in our member section. Please contact us to request a peer match today.